Let me start of by saying, I am very happy I don’t have cancer. It’s a horrible disease and I don’t wish it on anyone. That being said, telling me “At least it’s not cancer” is not making me feel any better.
Fibromyalgia the mysterious disease
I live with Fibromyalgia, there’s not a whole lot known about the disease. We have recently found out that it’s a progressive neuro-disease. At least that’s what they think now. It changes about every year, because the fact is, they really don’t know. It’s mysterious and there is no cure.
I am in pain every single day, the pain travels through my body. I never know how bad it’s gonna be, where it’s gonna show up or if I’m even able to function at all.
With fibromyalgia comes the fibro fog, or brain fog. That means that it feels like there is a thick fog in my brain preventing me to think clearly. Or even find the simplest of words, in any laguage for that matter (I speak three on a daily basis)
Next to my Fibromyalgia I have been diagnosed with Graves’ disease and Hashimoto’s disease (both autoimmune thyroid disorders), Celiac disease and Raynauds disease (both autoimmune as well). They say when you have one autoimmune disease, more will follow. Why is that though?
Many vague symptoms
Prior to being diagnosed with any of my conditions I had a long list of vague symptoms that didn’t seem to correlate to eachother. The first thing they test for is cancer. It’s the most well known disease that can show itself in different ways.
Along with a bunch of other test, including general autoimmune (ANA) test they came back. All your test results are negative. You are the picture of perfect health.
People around me were relieved. “At least it’s not cancer”. While I was relieved I didn’t have cancer, I still did’t know why I felt so ill all the time.
Graves’ Disease
At the young age of 19, after 3 years of being tested on a range of things without any results, this one came back positive. I had Graves’ disease. It was so extreme and in such far stages, that my main symptom (being out of breath) was caused by the strain on my heart.
At the age of 19 I was rushed into the heart monitor room because they were afraid I could have a heart attack at any moment.
But at least it’s not cancer, right?
The way to treat Graves’ disease back then, is to give you some type of chemo therapy, to slow your thyroid down. By the way chemo therapy is also used on patients with Lupus, RA and other autoimmune conditions as a treatment option.
A decade later
Fast forward a decade and some. The Graves’ disease is in remission, yay! I’ve gotten all the new diagnosis I’ve mentioned above. But also a msyterious new thing that is making me loose weight, fast. Very fast!
Even though I eat plenty, I keep loosing weight. Again they have done a lot of test, tested for cancer again. All clear. “At least it’s not cancer” someone says to me. Uhm that’s all nice and all, but I am loosing weight so rapidly that my organs are now in danger of failling. And they can’t figure out why.
“At least it’s not cancer” is again not making me feel any better.
6 months go by, and I weigh 45kg/99 lbs and I am 1.73cm/5 feet 7 I am very very underweight. Finally they figure out I have a bacteria causing all my issues and the road to recovery can begin. Yet again
What does the future hold?
At this point in time I think I have all my autoimmune issues and other health stuff under control. They are chronic, meaning they will never go away. The furture is uncertain, because we simply don’t know how my issues will progess with time.
I have new undiagnosed issues, like my teeth dissolving from the inside out. No idea why that is happening, but we’re trying to treat it.
I concider myself very lucky that I don’t have cancer. That is a fact. It’s also not what the article is about. My point is, there are things that are just as bad and deadly as cancer. And things that need to be treated the same way as cancer. The diagnosis “not cancer” isn’t always a good one. Please remember that when you tell your friend next time “At least it’s not cancer”
It’s no secret that women’s medical issues have historically been minimized and dismissed by healthcare professionals worldwide. In ancient Greece, doctors described how the uterus is like a living breathing creature that wreaks havoc on our systems and so I would expect Dr. Hippocrates to tell me that my illness is hysteria. I expect that from medical care from centuries ago.
We’ve come a long way since then, so I wouldn’t expect an ER doctor to say that in the 21st century.
Welcome To Medical Care in the 21st century of the Middle Ages
But yet, that’s exactly what happened. I went in with high blood pressure, chest pain, and fatigue, and I was told there was nothing wrong with me, and to go home. That was the first of many times that doctors dismissed me, ignored my complaints, or told me to relax. (Yes, it was, in fact, my doctor and not Frankie who said, “RELAX”).
I had to deal with:
The doctor who told me that my migraines were here to stay, so I should just take some Excedrin and get used to agonizing pain being the rest of my life.
The urologist who told me that despite the fact that I can feel my bladder pretty much 24/7 that there was nothing wrong with me, and he couldn’t help me.
And the primary care doc who treated me like I was a checklist to complete and hand back to the insurance adjustors.
But that was the first time I fully understood what it meant. It meant that it didn’t matter that I was in pain, or sick, or struggling – they just wanted me out of there. I remember the feeling of being half-naked in a hospital bed, with wires attached to my chest.
Vulnerable and afraid, now I had a new feeling. Shame. I felt ashamed for wasting their time. No. that wasn’t it. I felt ashamed because they made me feel like I was wasting their time.
In my replays of that scene, I’m assertive, and I make my case. I floor him with my eloquence calling him out on his misogyny. I tell him he’s dismissing me, and I ask for a second opinion.
In real life, I burst into tears.
Making My Voice Heard
I didn’t know what to do, but I was going to make my voice heard. Unfortunately, as it turns out, no one wanted to listen. Calls to their patient advocacy office went unanswered, and no one other than the billing department even seemed to remember or care that I was a patient, a customer of their establishment. I tried to advocate for myself – but no one was listening. We need to make ourselves a priority
My experience isn’t unique. A quick search on Google reveals that this is an ongoing problem. John Oliver did a piece on the disparity of treatment between men and women by healthcare professionals that sounds like our medical system is stuck in the dark ages. And unfortunately, there’s plenty of evidence in the laws being passed that women’s health simply isn’t a priority. And it won’t be unless we make it one.
Prioritizing
The other day I was driving my husband to the airport and my chest started to hurt. I suffer from chronic pain from an undiagnosed mystery condition (otherwise known as IDS – Ignored by Doctor Syndrome), so I tend to simply ignore it. It’ll go away in a few days. 6 years later I’m still saying that.
I bring it up at my checkups, but it’s routinely ignored. It occurred to me that if Alex was in pain, he’d go to the doctor, he’d be seen, and he’d come out of there with a solution. He simply wouldn’t entertain any other option.
Why wasn’t I doing the same thing?
I realized that as much as I hate to admit it, part of the problem is me. I rely on humour to cope, so I spend a lot of time minimizing my own symptoms and pain, historically even with my doctors. I was always putting everyone else ahead of myself because I’d lived with the pain for so long, why prioritize it now.
The question I should have been asking is why not prioritize it now? My family relies on me to take care of myself to be around for years to come, and part of that means taking an interest in my own healthcare. I’m done ignoring my health, and I’m done letting others ignore it too. For the first time in my life, I am going to prioritize myself.
Because that’s what we need. As chronically ill patients, we need to put ourselves first so that we’re around to take care of the people we love. I resolved to set up a system to make sure I get listened to and get the healthcare I deserve.
Take Yourself Seriously
The first thing that we as women need to do to make sure we’re taken seriously is to take ourselves seriously. If you tend to downplay your pain or put on a brave face by minimizing your pain or your symptoms, even the best of doctors is going to have trouble diagnosing you.
Pay attention to your body and be mindful of your symptoms. Don’t ignore them simply because you’ve had them for a long time. If you’ve been in pain for a while and don’t know why, that’s something to take note of.
Write It Down
I always think of things I need to discuss with my doctor in the most random places and times. In an escape room, while I’m doing dishes, or right before bed. I always say I’ll remember but I never do. Write down your issues when you think of them, and don’t dismiss them when you’re in the doctor’s office just because you aren’t feeling that way at that moment. Articulate the feeling in your smartphone or your journal or notebook so you have it to refer to.
Do Your Homework
This one is the most time consuming but will make a difference. Research your doctors on Yelp, Angie’s List or Healthgrades. Look for people with 3+ star reviews and read through them to learn why people rated the way they did. Google the doctor to see if there are any articles or blog posts written about them that raise red flags. You can also check with your friends and family to see if they have someone that they recommend.
This part may not work well for everyone, but if you aren’t happy with your experience, try another doctor. Years ago, I went to see 5 different physicians before I found the doctor I was with for 6 years, and I would have stayed with if he hadn’t relocated.
Enlist A Friend
If you’re worried about your ability to remain calm and put together or advocate for yourself, bring a friend or a family member you trust with you.
I’ve been in pain as long as I can remember, and I’ve been ignored for years, and sometimes I get tired of fighting and feeling like its an uphill battle. I remembered though that as long as I have a voice, and I do, I can speak up for myself and others, and I can be heard. As long as I have a choice, I can find healthcare professionals to take me seriously. I don’t have to stay where I am, I can always make a different choice.
Have you found any techniques that work particularly well for you to get taken seriously by healthcare professionals?
About The Author
Minessa Konecky is a social media strategist and business coach who has lived with an assortment of chronic illnesses since her teens including chronic back pain, migraine, general anxiety, and depression. Instead of a unicorn, she’s opted for a dragon as her unique snowflake avatar because for her they symbolize wisdom and strength that help her triumph over her restrictions, but also let her take a nap when she needs one. She enjoys bingewatching post-apocalyptic TV shows, meditation, playing with her 3 mini huskies and has an encyclopedic knowledge of pointless 80s and 90s media trivia.
I have been battling with stage 4, widespread Endometriosis for what has been a good part of the past 10 years. Endometriosis occurs when cells, like the ones in the lining of the womb, are found elsewhere in the body. These cells react the same way each month as those in the womb do, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. Therefore, this process causes debilitating symptoms such as chronic pelvic cramps, lower back pain, painful sex, bowel dysfunction & pain, bladder pain, chronic fatigue, and infertility.
I was diagnosed with Endometriosis two weeks before my 18th birthday. This was after I had been misdiagnosed in my previous 2 surgeries (one of which that led to me having my appendix removed). It was confirmed that I had widespread, stage 4 endometriosis throughout my pelvis covering my bladder, bowel, ovaries, and Fallopian tubes. This diagnosis resulted in me getting a bowel resection.
Treatment I am Recieving for Endometriosis
Fast forward to now, and I am currently recovering from my 10th surgery,
all thanks to this disease. Due to having such extensive damage on my bowel, in
Oct 2018 I was fitted with a Sacral nerve stimulator to help it function (like
a pace maker, but for the bowel). It’s a relatively new treatment, and we
still haven’t found a setting which works for me how we would like it too. It’s
a little frustrating, but I’m sure I will keep you updated and go into
detail on one of my posts.
Unfortunately, a couple of weeks after my recent surgery I was admitted
into the Royal Liverpool Hospital for a week due to my bowel becoming extremely
dilated. In turn, this caused horrific abdominal pain and my bladder to
constantly be in retention. As a result of this I now have a catheter in for
the next 6 weeks, whilst I trial new bowel medication Resolor. This was sprung
on me out of nowhere. Yes, I’ve had endometriosis removed from the bladder in
the past, but it’s never caused problems to this extent. It’s been an
adjustment and is something I’m still trying to wrap my head around. It’s a
knock-on effect with this disease. My self confidence has taken a great big
nose dive the last few weeks. I am trying to adjust to my new normal, but I’m
trying to be patient. It will come with time I’m sure.
One of the things I am incredibly grateful for is that our beautiful 3-year-old daughter Grace is in our lives. She truly is a little miracle. We had everything stacked against us, but one day when we least expected it, we saw those two positive lines on our pregnancy test. We were 2 weeks away from starting our first cycle of IVF when our dreams came true.
My Pregnancy Experience
Pregnancy was difficult. I bled throughout my pregnancy, suffered with Hyperemesis Gravidarum, was high risk throughout, and then Grace decided to make an early appearance at exactly 35 weeks. We felt incredibly lucky that she had defied all odds and was healthy. Fast forward to today, and we now have a very happy, sassy, and mischievous 3-year-old. We always intended to grow our family and give Grace a sibling, however, unfortunately, it was not meant to be.
Longing for Another Child
We were medically advised not to have more children for the sake of my health. Those words were extremely hard to digest and accept. In all honesty, I’m not sure if I’ll ever get over hearing those words. My disappointment in no way means I am not incredibly blessed and thankful for our beautiful little girl, because believe me, I am. But, it’s more so that the choice to have another child has been taken away from me (like it has been for so many others). The choice that so many can take for granted is the choice we long for. I think many people can make the mistake of assuming that you are ‘selfish’ if you want more than one child and that you should be ‘happy with what you have’. Just because you have one child, that doesn’t mean it takes the pain away from feeling like you don’t have a choice.
Motherhood is a beautiful journey, but it can also be a very tough one. Add a chronic illness into the mix, and some days you can feel like everything if falling apart. My thought while writing this is that if I can open up about my journey with Endometriosis and motherhood it may help me mentally arrange my thoughts, as well as hopefully help someone reading this. I want anyone in a similar situation to know that they are not alone. Being chronically ill and a mama can be very isolating and lonely at times, so I want to help others feel less alone.
About the Author
Anna is 25 years old and she lives in North Wales with her husband Scott and her beautiful daughter Grace. Anna has decided over the years to share her journey of battling a chronic disease whilst trying to be the best mother she can be. She originally started sharing her story on Twitter (@BattleWithEndo), and then moved to Instagram (@battlewithendo_ox) with the intention of starting a blog.
Systemic Lupus Erythematosus (SLE) is a condition that nearly 1.5 Million Americans live with but very few people actually know about. SLE is a Chronic (long-term) autoimmune disease that causes the body’s immune system to become overactive and attack the body’s normal, healthy tissue. It can cause inflammation, swelling, and fatigue, as well as damage to the joints, skin, kidneys, blood, heart, and lungs. Just like any other chronic condition, there are multiple options as far as methods of treatment. However, unlike most common conditions, there have been very few new treatment options approved for SLE in recent history.
Before we look at my story and what has worked for me over the years, let me give you a little backstory on me. When I was diagnosed in 2012, I had been working as a Registered Nurse for 5 years on an ICU step down unit. I had just finished my Bachelors’ degree in nursing the previous December and was 8 weeks into my Masters in the Nursing Education program. So I was no novice when it came to current education and my own health. That being said, Lupus was not something I was all that familiar with, as it wasn’t something I learned much about in school or had come across often in my career. But I did extensive research and learned everything I possibly could once it was brought up as a possibility.
My Journey Towards a Diagnosis
I was officially diagnosed with Systemic Lupus Erythematosus (SLE) in the summer of 2012 after a full 7 months of being very ill with no firm diagnosis. In February of that year, I came down with what started like my typical case of bronchitis, which I get at least two or three times every single winter. However, this turned out to be very anything but typical for me. I couldn’t seem to shake the symptoms this time, despite me having taken several rounds of antibiotics and steroids. I was then admitted to the hospital for five days. I got IV antibiotics and steroids while they ran just about every possible test, but nothing seemed to work and all the tests came back negative.
By the time I was discharged I had no more of a diagnosis than I did when I went in. I continued to be VERY short of breath with minimal exertion, and the cough was exhausting. As 2012 continued I developed more issues beyond the respiratory issues I started the year with. My feet started swelling and became so painful I could hardly walk, and I was always tired. No, that’s not completely accurate; I was EXHAUSTED constantly no matter how much I slept. I always felt like my brain was foggy and I would often forget my train of thought mid-sentence. My entire body ached. Finally, in the late spring of 2012, my doctor decided to run more blood work. She decided to have a whole autoimmune panel done on a fluke. She never expected them to be positive because they had been negative just a few months prior. Much to both her surprise, and mine, they all came back positive.
In late Summer of 2012, I was finally diagnosed with Systemic Lupus Erythematosus along with a long list of other things which I won’t currently talk about. This was after several months of telling the doctor that there was definitely something going on. When I first saw this Doctor in May, she said I probably had something similar to Lupus, but that it wasn’t Lupus and there wasn’t really anything she could do to treat it. So between May and August, I journaled every single sign and symptom and took pictures of anything that could be seen by the naked eye. I knew my body and after doing extensive research on Lupus I was positive that this is what I had. During that time as I was experiencing a severe flare, I also took the time to look back at my medical history going all the way back to the late 1990s. I did this to see if I could correlate any problems of the problems I had been dealing with at that time to the new symptoms.
As I looked back, it all started to fall into place and make sense. In the late 90s, early 2000s, while I was in high-school I was diagnosed with Mono. Which isn’t that abnormal for a high-school student. What is abnormal is the fact that it lasted for SIX months, at least that is what I was told. Looking back with the knowledge I have now, I feel confident saying that what they called everlasting Mono was actually, in fact, my first of many BIG Lupus flares. For those of you who are unfamiliar with the link between Mono and Lupus, research has shown that a protein made by the Epstein-Barr (Mono) virus binds to areas of the human genome linked to an increased risk of certain autoimmune diseases. Lupus is one of those autoimmune diseases.
Undergoing Treatment
Finally, after documenting everything and showing the doctor all the information that I had gathered over the last several months, I was diagnosed with SLE. At first, I was started on Plaquenil only. Plaquenil is the OLDEST, tried and true, Lupus treatment available. It was approved by the FDA for treatment of Lupus in 1955. It is supposed to relieve some lupus symptoms such as fatigue, rashes, joint pain, and mouth sores. I have remained on this medication since I was diagnosed. But, if I am being totally honest, I really don’t know that it does much for me. however much like most of my other Lupie (a person with Lupus) friends, I continue to take it just in case.
After a few months of taking Plaquenil alone and no improvement of my symptoms, I was started on Imuran. Imuran is an immunosuppressant which alters the activity of the body’s immune system so that it will no longer attack the body. This medication is traditionally used as an anti-rejection medication for individuals who have had organ transplants. With Imuran comes the possibility of developing issues with your blood, such as decreases in your red and white blood cells. This means people on it require frequent lab draws. I was on Imuran for about 8 months and had no improvement of my symptoms. I continued to be exhausted all the time and hurt all over the place, while my labs were not improving.
My Experience Taking Prednisone
While we were trying to find the correct medication, I was taking Prednisone. It was a corticosteroid to help keep me stable until we found a treatment that would work, and that I could stay on long term. Prednisone is not something that anyone should be on long term if they can help it. In many chronic illness communities, prednisone is referred to as the devils’ tic-tacs. Prednisone is a fabulous drug in the sense that it can make you feel better and treat many issues quickly. But it also has a whole host of negative side effects too. It can cause weight gain, insomnia, hot flashes, and insatiable hunger just to name a few. Sadly, prednisone is one of the most effective medications for decreasing swelling, warmth, tenderness, pain and inflammation caused by Lupus.
For me, however, it did more harm than good. I was on such a high dose of prednisone for such a long time that it impacted my adrenal glands. Our adrenal glands make a steroid called cortisol that we need to help control our blood pressure and heart rate, among other vital body functions. In my case, the high doses of synthetic cortisone, aka prednisone, caused my adrenal glands to no longer produce cortisol. This threw me into adrenal insufficiency and caused me major issues. On a daily basis, it would be nothing for my blood pressure to stay under 90/50 and drop under 70/30 when I would stand up. This would cause me to be extremely nauseated, to the point where I would vomit and sometimes pass out. In order to treat this, I had to take supplemental cortisone to get my body to learn to make it again.
It’s taken three years, but my adrenal glands have started to work again. I can now no longer take prednisone for any length of time without risking major issues. Even though my adrenal glands are working better now, any time I get sick, have any big flare or have any kind of procedure/surgery I have to take extra cortisone as a stress dose. Otherwise, I risk having major issues as I have mentioned above.
My Experience Taking Methotrexate (Mtx)
After taking Imuran for a number of months with no improvement, my Doctor decided to try me on Methotrexate (Mtx). Methotrexate is a chemotherapy agent that acts as an immunosuppressant and is in a category called Disease-modifying antirheumatic drugs (DMARDs). Mtx is actually the Gold Standard for treating Rheumatoid Arthritis (RA) and was approved by the FDA for treatment of RA and Lupus in the late 1980s. Mtx is used in Lupus to treat the pain and swelling of the arthritis that can accompany lupus.
DMARDs not only reduce this pain and swelling, but they may also be able to decrease long term damage to your joints. I took this for a while as a pill, which seemed to be the first medication that I had tried that actually seemed to help. The only drawback for me was the nausea. It was INTENSE. But we were able to change to the injectable form and the nausea decreased dramatically. The Mtx and the Plaquenil worked well for a while. Until they didn’t.
My Experience Taking Benlysta, My Saving Grace!
A little shy of two years after my diagnosis, in the spring of 2014, I felt like the Plaquenil and Mtx were no longer working. My labs were okay, but I still felt awful ALL the time. I might have had a handful of good days a month, but that was it. Finally, I told my Rheumatologist that something had to change. I told her that I couldn’t keep going the way I was. That is when she first mentioned Benlysta. Benlysta was still relatively new at this point, as it had only been approved for use by the FDA for about three years (Approved in 2011). Benlysta was the first new medicine to be approved for the treatment of adults with SLE who are receiving other treatment in FIFTY YEARS!!! It was a totally new way of thinking for the treatment of Lupus.
Benlysta is a Monoclonal Antibody, a biological medication, which works by calming down the hyperactive immune system of lupus by inhibiting a protein called ‘B lymphocyte stimulator (BLyS)’ which is believed to increase inflammatory reactions that attack and damage the body’s own healthy tissues. Basically, in layman’s terms, the medication knocks out the immune system so it can no longer attack all the things it shouldn’t be attacking, like the joints, the heart, and the brain. When it was first approved by the FDA in 2011 it was only available for adults, and only available to be given intravenously. Since then that has changed. In 2018 the FDA approved it to be given in an Injectable form. And just last month (April 2019) it was approved for the treatment of Lupus in everyone over the age of five.
Benlysta has been my saving grace and a doubled edged sword all in one. It has given me my life back. When I am on track and able to get it every 28 days like prescribed I feel my best. It gives me 2 ½- 3 good weeks a month (sometimes a little more, sometimes a little less). Whereas when I was on previous medications, I would only have a handful of good days a month. ‘Why is it a double-edged sword’ you may be asking? Well, that’s simple! It gives me my life back but also makes me so much more susceptible to infection. Since it knocks out my immune system so it will stop attacking my body, it also knocks out the immune system that would fight off infection. So, during the winter I am essentially home-bound because I pick up every little bug that comes my way.
Everyone Is Different
Each person’s experience with Lupus is going to be different and everyone will respond to medications differently. Some people may never need Benlysta, and others may need the bigger guns like Cytoxan, which I didn’t mention because I have not had needed to try that. Sadly, no doctor can just look at a person’s labs or their physical exam and know what medication or medications will work for them. It’s honestly trial and error for most people. For right now the trio of Benlysta, Methotrexate, and Plaquenil are what is working for me. But that could change tomorrow.
Lupus is ever changing, as is the treatment. There are currently several drugs for lupus in the trial phases, so we can only hope that they will make it through the process and be available for us in the future. My advice to anyone newly diagnosed or anyone who just isn’t doing well on their current regimen is to do your research. The best thing you can do for yourself is to research and be your own advocate. Find out what’s out there and what’s available and talk to your doctor about what you think might be best for you. Because, in the long run you are the only person who knows what is best for you and your health.
Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.
Nearly everyone has had sore eyes at some point. Sometimes they get better on their own, but they can also be a sign of something more serious.
Your eye doctor can figure out what’s going on and find the right treatment for you.
My Eye Pain Story
Have you ever experienced the pain of something sticking into your eye, like an eyelash or a bit of debris? It hurts badly, doesn’t it? Well, I have that pain almost every day. I was born with a congenital eye defect called Distichiasis. It means I have a double row of eyelashes in each eye, and one grows on the inside of the eyelid, so the eyelashes scratch my corneas and the surface of my eyes.
The defect was only diagnosed when I was a toddler, following a long battle between my mother and her local doctors. As a baby I had suffered extensively with sticky eyes, and all the usual childhood eye illnesses, but nobody would listen when mum said it was serious. Then my brother was born and displayed the same symptoms. Finally, the doctors decided to take a closer look.
Seeking Medical Care
My first eye consultant told my mum that he had only ever seen this condition in a pet chihuahua! And up to now, at the age of thirty-seven, I have only ever known it to be present in me, my brother and my dad. I have been diagnosed as carrying a recessive gene, FOX C2, which means my official condition is called Lymphoedema Distichiasis. I could be prone to swollen limbs and developing cellulitis as I grow older, but so far, my condition only seems to affect my eyes. My dad and brother have both been hospitalized due to the Lymphoedema aspect of our condition. It is very strange.
Treatment
As a child I underwent over a dozen medical procedures to remove the ingrowing eyelashes in both eyes. This involved cryogenic treatment, and laser treatment, all done under general anaesthetic. It left me with severe scars on both corneas, which gradually left me prone to severe Dry Eye Syndrome. My eyes do not produce enough natural tears to keep the surface lubricated, so I apply eyedrops frequently throughout the day, and I use an overnight ointment every night.
About eleven years ago I had eyelid rotation surgery, where the surgeon cut my eyelids and repositioned them in the hope that my eyelashes would grow outwards rather than inwards. It was very painful, but it seemed to help for a while. Nowadays I manage my condition by removing the ingrowing eyelashes with tweezers, and I visit Manchester Royal Eye Hospital for a check-up once or twice a year.
Daily Life
Despite my best efforts, I have not yet found another person with the same condition. Indeed, I didn’t consider myself particularly ill up until I began to explore the spoonie community on social media. My doctors had never made a big fuss about my eye condition, and I always just got on with life. I used to work in an office full time, I drive a car, and I have young children, although I was warned there was a fifty-fifty chance they could inherit my condition. It seems that my husband’s genetics have watered down the illness, however, because both our children seem to have perfect eye health. I am simply a freak of nature, as my husband affectionately calls me!
All my life I have experienced painful eyes, but it is so normal that I only notice it on days when my eyes don’t hurt. The pain can be sharp, stabbing sensations like needles, or it can be an ache, as though my eyeballs are just tired. Some days I want to rip my eyes from their sockets just to stop the excruciating pain. I am also very light sensitive, so I wear sunglasses even when the sky is white, because the light hurts my eyes. There is no cure for this condition. I can only manage it by removing the ingrowing eyelashes, and using eyedrops and ointment to try and ease the pain.
About The Author
Catherine Green is a pagan housewife, who blogs about lifestyle, family, the world of books, and of course, her favourite pastime, ghost hunting. She also blog about her adventures in British shamanism and witchcraft, holistic health and wellbeing, and living with a rare genetic disorder. Find her on facebook.
When you live with chronic illnesses, sometimes your body can react differently than the average person’s would under normal circumstances. This can not only be confusing to you, but also to the doctors or other medical staff you may encounter when trying to seek treatment and can effect the care you receive. I had an experience with this when I needed to have my tonsils removed.
I had my tonsils removed when I was 23. They had gotten infected and I went to the emergency room for care. At the time, I couldn’t open my mouth because the infection had gotten so bad. The doctor on call tried to force open my mouth and this caused so much pain that I literally passed out. However, he told my mom that I just fainted because I was scared.
Grave’s Strikes Again
Year prior to this, when I was about 19 years old, I was diagnosed with Graves’s Disease after years of experiencing a lot of vague symptoms that no one had been able to figure out before. When I was diagnosed with Graves’, I had to take a lot of medications, 13 pills, to treat not only the disease itself and it’s effect on the thyroid, but also to treat cardiac symptoms and to help with the side-effects of all the other medicines.
After about a year and a half in the medications, my Graves’ Disease went into remission, but my overall health had suffered from all the medication I had taken during that time. Sure enough, I had gotten very sick. I had double pneumonia that lasted about three months. It took a lot of antibiotics, but I eventually recovered. At this point, I decided that I really just needed a break, so I decided to take a semester off from University and went to Aruba for five months to just relax and recharge.
A Break From One Problem is the Start of Another
While in Aruba, I started getting horrible throat infections. My throat would be bright red with white spots and extremely painful. This was accompanied by a very high fever of 40* C (104* F) or higher. I had been to the hospital multiple times for it, about four times in a five month span, and each time I would be prescribed antibiotics, but it kept coming back. Part of the problem may have been that Aruba, while beautiful, is a very dusty island, and when you breathe in the dust in the air, it can irritate your lungs and tonsils, making it difficult for throat infections like I had to resolve.
After 5 months, I went back to Holland because my semester was starting at University. I just got my first apartment in Amsterdam and I wanted to get back. Over the next year and a half, I was still constantly getting these throat infections and had been on antibiotics at least seven times. The antibiotics would work, but not well enough, and my tonsils kept getting infected.
Operation Time
At some point, the doctor told me that he recommended having my tonsils removed. As I was still young, he said it would be a fairly easy operation, so considering all the problems I had been having, he thought I shouldn’t wait until I was older, as it’s a much harder procedure on older people. Apparently, they almost peel out on a young person, but with older people, they are attached more to the body and therefore the procedure requires a lot more cutting. I reluctantly agreed, as I was having these severe throat infections almost monthly by then, and decided to go ahead with the surgery.
The day of the surgery arrived. I am very sensitive to all medications, so I advised the doctors not to use too much anesthesia. I knew just a little bit will do the trick and told them they should start with a very low dose. Prior to the procedure, I had a meeting with the anesthesiologist. Thankfully, he really listened to me, which made me happy and more comfortable about the procedure. Sure enough, when the time came, they really did give me a very low dose of anesthesia. I know because I can remember them talking during the operation. I didn’t feel anything. I wasn’t scared. I just felt a really weird sensation like I was sleeping, but I knew I was awake. I could hear the people around me, but I could not move or wake up or do anything. It’s a really strange sensation.
I woke up after the surgery. Everything went well, but it took me a long time to recover. It took me about eight hours to wake up after surgery, whereas I was told that most people wake up after only four five hours. I was told that after I wake up, if I could eat some ice cream and go to the bathroom on my own, I would be able to go home to recover. But I just couldn’t wake up. I couldn’t eat the ice cream. It was about ten hours after the surgery before I could manage to do what they requested and was discharged to go home with my mom to recover.
I went home, but the pain was still so bad that I could hardly tolerate eating the ice cream or even drinking. This progressed, and after three days, I was in so much pain that I couldn’t even open my jaw anymore. So after three days I was in so much pain and I couldn’t really open my jaw anymore. I think it was a Friday evening, as I usually got sick on Friday evenings for some reason, and I called my mom and told her that I felt like I needed to go to the hospital.
A Rough Recovery
I felt very strange. I was in a lot of pain. I felt like I was floating and hallucinating. Something was very wrong. My mom rushed me to the emergency room and I saw a doctor. I’ve always been kind of jittery and anxious about anything hospital or doctor related, so I only go when I urgently have to. Well I was there and feeling anxious, but I was in a lot of pain and couldn’t really open my mouth, so I knew I needed to be there.
I told the doctor how I was feeling and that I couldn’t really open my mouth when he came to examine me. He didn’t take me seriously and thought I was being dramatic and exaggerating. I opened it as far as I could, but that wasn’t good enough. He told me to “ man up” and open my mouth properly, but when I was unable to do so, he took his hands and forced it open. This caused so much pain that I actually lost consciousness.
I woke up on the floor with a pillow under my head and my mom sitting next to me. There’s no doctor in the room at this point. I asked my mom what just happened. She knew the truth and was furious. Soon, the doctor came back into the room. He blamed the incident on me being scared and having and anxiety attack and then just walked away. I was stunned! I knew I had fainted from the pain and this doctor had the nerve to not listen to me and then blame it on anxiety. Just because I wasn’t screaming and carrying on, it doesn’t mean I’m not in pain. That’s something I wish people understood. When you have chronic illness or chronic pain, you tend to react differently to pain than most “normal” people. You can almost hide it and push through when other people would act like they’re dying.
Yet More Antibiotics
In the end, he gave me another round of antibiotics that I had to drink while my throat was infected and open after surgery. I can still remember the flavor and smell to this day, and if I smelled it again, I wouldn’t be able to take it because it was such a traumatic experience. The pain I had was the worst pain ever! It was even worse than childbirth! Drinking the gross antibiotics twice a day in my open , sore, infected, swollen throat was no easy task. They were a gross orangey flavor and I’d just drink it as quickly as possible while my entire head was wrapped in bandages and packed with ice. It was awful!
The antibiotics did help this time. It took me longer than normal to recover, but in the end, it was successful. To this day, I have never had another throat infection. And have only had sore throats maybe three times and they were nothing compared to the infections and fevers I had previous to the surgery.
Doctors, Please Listen to your Patients
While I must say the surgery was successful, this was just one of many stories of doctors who didn’t believe me or just didn’t take me seriously. Obviously, not all doctors are bad. There a lot of good doctors out there. This doctor probably meant well and really thought I was having a panic attack, but I would like to share this story for all the people living with a chronic illness and issues like these to know that these things happen everywhere. I also hope that some doctors will see this article and realize that what they do is very important. How they react and interact with patients and whether it seems like they believe them can make a huge difference.
I hope you enjoyed my crazy story about when I got my tonsils out. From this experience, I learned how important it is for doctors to listen to patients. It can make a world of difference in the patient’s outcome and, for doctors, can make a difference in their treatment plan and relationship with their patients. It is important to be your own advocate and speak up when something doesn’t seem or feel right. Especially when dealing with chronic illness or pain, what seems “normal” may not be, so we must advocate and educate on our own behalf’s to have the best possible outcome.
Doctors don’t like to say ‘I don’t know.’ It appears to be a phrase they hate. There’s a lot they will do to avoid acknowledging that they aren’t sure as to what is happening – Doctors will often use lots of scientific jargon and short phrases that remove or dismiss responsibility from themselves. Let’s explore them, shall we?
They describe the condition
There are many diagnoses out there that give doctors an easy out when it comes to explaining a strange symptom. The most common ones, arguably, are ‘idiopathic’ and ‘essential’. If you are told you have an idiopathic or essential condition, be aware that the doctor has only told you what’s happening, not why or how!
The term idiopathic literally means ‘arising from an unknown cause’. My partner was diagnosed in July 2017 with idiopathic osteoporosis. Osteoporosis itself is much more a definition than an explanation, as osteoporosis translates into ‘porous bones’. For people who fit the standard expectations, idiopathic is sometimes all the closure you would get. For example, a woman in her 70’s who gets the osteoporosis diagnosis is going to be told she has idiopathic osteoporosis, presumably due to age. However, since Al is a man under 40, it was essential to dig deeper to define the cause, as the usual mechanisms were not in play.
‘Essential’ is another way doctors avoid needing to say ‘I don’t know’. The term essential is used in standard English to describe being either of the utmost importance (this is an essential piece of the dish) or of being purely that one thing (‘essential oils’). In medical terminology, though, ‘essential’ is a synonym for idiopathic – indicating that the issue is just the description with no cause attached. ‘Essential’ is often used to describe neurological symptoms that have no obvious connection to the conditions that might usually be associated with them. Essential tremors are an example. If your doctor uses idiopathic or essential in their diagnosis – or gives you a descriptive diagnosis (like osteoporosis), with no mention of why it’s happening, it’s time to press them to explain further or seek a second (or third) opinion.
Blaming the Patient
Sometimes when doctors have trouble finding the cause of the problem, they turn around and make it, on some level, the patient’s fault.
‘Maybe he didn’t develop properly as a child’ is doctor language for ‘I see there is a problem, there’s irrefutable evidence of that. However, I can’t figure out the cause, so maybe he was born this way and we only just figured that out’. My partner and I were told this when we were investigating the cause of his osteoporosis. His broken hip and DEXA scans proved that he definitely had unusually brittle and weak bones, but this endocrinologist ran every test she could think of, and everything she thought to check didn’t explain anything. After we assured her that Al had not had weak/brittle bones as a child (he actually had been pretty accident prone, and at one point he broke a rock with his head!), or as a young adult (he was very involved in mixed martial arts, so had plenty of opportunities to reasonably break bones, but didn’t), we struck out in search of an endocrinologist who could think of more options.
‘This may be a genetic variant’ – sometimes abnormal test results fit with a person’s genetic history. Al was told a couple times that his blood test indicated mild anemia, but at one point another doctor of his looked the information over and told him he likely has smaller hemoglobin than average because he is of distant Mediterranean descent. I’m not disagreeing with the statement, it may be true – Al is Hispanic so there is some Spanish in his ancestry. However, it did take the focus off his hemoglobin size and density when he actually had a form of anemia that required treatment.
Malingering is the process of pretending to have a problem in search of some form of secondary gain. For example, a person with an opiate addiction may pretend to be in more pain than they are in to get an extra pill. For patients with many types of invisible illnesses, one of the ways doctors may dismiss our very real pain or other symptoms is to say that we are malingering in order to get attention or other gains. I was very fortunate that I was not accused of malingering, but many other people with conversion disorder/FND, fibromyalgia, and other conditions that don’t show on scans or tests are often accused of it. This results in these patients needing to ‘prove’ that they aren’t faking their illness.
Ways Doctors say ‘I give up’
‘Diagnosis of exclusion’ means that the doctor has run out of possible diagnoses. Doctors either recognize a condition when you walk in the room (‘oh that sounds like whooping cough’, or ‘I’d know that rash anywhere, you have shingles’), or they need to start coming up with hypotheses (guesses) that they can then test (usually against samples from you, or testing your response to stimuli). However, at some point, the doctor will run out of guesses. When the doctor runs out of guesses before you have a diagnosis, their last guess becomes their ‘diagnosis of exclusion’ – usually something that is difficult or impossible to confirm or deny with additional testing.
My condition, FND, used to be considered a diagnosis of exclusion by many neurologists – and honestly still is at times, even though there are now are relatively simple confirmatory tests out there – mostly related to consistency of symptoms and ability of the patient to be distracted from symptoms. Unfortunately, these are sometimes associated with malingering (pretending to be sick for secondary gain), and a lot of neurologists simply haven’t kept up with the research.
‘It’s a coin toss’ is usually used in regards to treatment. Will this surgery help me, doctor? ‘It’s a coin toss’. This is more likely to occur when your condition has been happening for a long time. If a lot of treatments have already been undergone and haven’t helped, the doctor is more likely to suggest treatments that are higher risk or are likely to be less effective. By telling you his or her degree of uncertainty, the doctor is abdicating their medical responsibility to advise you, and allowing your desperation or pocketbook to determine your course of treatment. While this may at times be a correct answer, it still isn’t useful for you as the patient. If you get told this, I suggest seeking a second opinion or discussing the pros and cons further with your doctor.
‘Let me refer you to…’ is, in all honesty, the most hopeful forms of giving up. When a doctor suspects or knows that your condition is treated by a different type of specialist, they generally refer you to the specialist in order for you to be properly treated. Sometimes, the more hopeful times, they get information that adjusts their thoughts – for example, Al’s second endocrinologist referred him to a hematologist because his B12 was almost unmeasurable and so she suspected he had pernicious anemia. Her suspicions were correct, so we are grateful for the referral.
I was referred by a neurologist who specialized in epilepsy to a movement disorder specialist who was able to properly diagnose me. Again, that was a very positive effect – once the neurologist determined that I did not have epilepsy, a colleague of his was able to suggest a movement disorder as an alternative cause – and recommend an office to go to. However, there are also times where doctors use referrals to get rid of challenging patients. By referring their patient to a different specialist, they are effectively passing the responsibility on and admitting that they cannot diagnose the issue.
Be aware of medical ‘I don’t know’s’
It can be extremely frustrating to see doctors only to learn that they cannot help you. Many doctors have found ways to avoid you realizing that they don’t have an answer until after you leave their office. As a patient, the more easily you recognize the ways the doctors avoid admitting their ignorance, the better able you are to either call BS and demand a better answer, or know when it’s time to find a different medical professional.
Again, be aware of terms that blame or put the responsibility on the patient, and condition descriptions that do not have any ‘meat’ or treatments attached. You deserve to have a full diagnosis, treatment options, and the ability to find people who share your diagnosis. Now that you know the terms, please keep your ears open to protect yourself from these non-answers!
Alison Hayes has a long history with disability and disabling conditions. She managed a mild learning disability in childhood, confusing her classmates by being in both advanced classes and the ‘resource room’. She was diagnosed with depression at the age of 9, and had her first unexplainable symptoms within a year or two of that. While in college, she started having strange movement symptoms, leading to an eventual diagnosis of conversion disorder in 2003.
Since then, she:
got on to SSDI,
got trained and certified in geographic information systems(GIS),
discovered new muscles by pulling, straining or spraining them,
taught college courses in GIS,
taught a lot of doctors about FND,
got a master’s degree in organizational change management,
regained the ability to safely use stairs, and
Started her own business. Twice.
She currently runs Thriving While Disabled, a blog to encourage others with disabilities to take back control of their lives, and is working on a community-building tool to enable the disabled community.
When I was 19, I was diagnosed with Graves’ disease, which is an autoimmune condition of the thyroid that causes it to work faster than it should, also known as hyperthyroidism. When I received this diagnosis, I was never told that pregnancy effects the thyroid. I had treatments at the time and eventually the doctors told me that I was cured. Well, eventually I became pregnant and remember these treatments when I was reviewing my medical history with my midwife at me first appointment, which was when I was about 13 weeks along.
I’m Dutch, and in Holland, we tend to use midwives during pregnancy. Most midwives are big believers in home and keeping things as natural as possible. I filled in the forms with all the pertinent information about my parent’s health history as well as my own, and included the information about my previous thyroid issue. They took all of this information and added it to my file along with recent blood tests, which were all normal. However, in Holland, the blood tests do not include anything about the thyroid.
I’m Pregnant…..But Exhausted!
In the first trimester of my pregnancy, I was extremely tired, much more than normal. I could only stay awake for about 3 or 4 hours per day and the rest of the time I would be sleeping. When I told my midwife that, she didn’t think this was unusual. She said that first 3 months of the pregnancy are the most important ones, so I should actually be resting as much as I can. Something still didn’t seem right, and I asked her if it’s normal to only be able stay awake for 3 or 4 hours. That seemed kind of excessive to me. Shes was dismissive of my concerns and just said that everybody’s different, so I should just go with it and I’ll feel better.
Then the nausea started. I was about 10 weeks pregnant when the nausea started. I spoke to my doctor and midwife and was told it will be better when I hit 12 weeks, but sometimes it goes on until about 14 weeks. At 14 weeks, I was so nauseas, I couldn’t eat and I was starting to lose weight, which obviously is not something you want to happen while you’re pregnant. This made them start to take it a little more seriously, and when I was 16 weeks pregnant, they gave me medicine to lower the nausea so I could eat something. That’s medicine helped a little, but the nausea didn’t go away. I didn’t just have morning sickness, I was nauseas all the time, and that lasted until I was 26 weeks pregnant.
By then, obviously, you could see on the outside that I was pregnant and while I was happy to be having a baby, I was not feeling happy. I felt like I had this dark cloud above my head all the time. I was constantly in a very bad mood and I was just very unhappy and I didn’t know why. I was less tired than in the first trimester, but I was still really tired. Everything was hurting me. I kept going to the doctor and would tell him that I understood these are pregnancy symptoms, but this just all feels very excessive. I didn’t know any other moms-to-be that were like this. I wasn’t really depressed, but more like in a bad mood and unhappy about everything. I felt like I wanted to fight about everything and I just didn’t want to do anything but just be laying down. When I was laying down, I felt really bored. I was just really unhappy all the time.
S
Something Doesn’t Feel Right
When I was about 26 weeks pregnant, those negative feelings finally started to fade and I thought that maybe I was finally get to the part where I do feel better. Things were going okay until I was 32 weeks pregnant. I was still working at the time for my job, and we had a dinner with all the coworkers. During dinner, I started getting these sharp pains in my belly, so I started to walk back and forth in the restaurant. All my coworkers were really nervous that I was going to have the baby right then and there. I thought I would walk it off and I’ll be fine. After an hour of walking back and forth in the restaurant, my manager suggested that maybe I should go home. My mom came and picked me up and took me home with her.
The next morning, these sharp pains still weren’t gone. I went back to the midwife and she told me that the baby wants to come out, but I was only 32 weeks long, so it was way too early. Then, she put me on strict bedrest. I was shocked! I was on strict bedrest until 38 weeks. So for the 6 weeks that followed, I was kind of like an incubator. That’s how I felt. During this time, my mood worsened. I was more and more unhappy and I just wanted to have this alien baby out of me because I was done with this.
I must say that this midwife gave very good mental counseling and support, and she’d come to my house and tell me things to calm me down, like that I may feel this way now, but if my baby’s going to be born now, it’ll be premature and and I’ll have all these worries. She said that even though it’s very hard being stuck in bed, that I should understand that I’m doing this for my child and will be fine. She reminded me that this was just temporary and when my child get born at a normal stage, I’ll feel better about it. I listened to her.
The doctor never did any more tests. They never checked anything extra. They just told me it was all pregnancy symptoms. And then the day came that I went into labor. I was excited and eager to go to the hospital, but that’s not how it works in Holland. The midwife comes to your house and she checks how far along you are and she makes a call if you can go to the hospital or not. She told me, nope. I was too far along already and it’s going really fast. I could not go to the hospital and would be having my baby at home. I’m like, WHAT??? I don’t want to have my baby at home!!! I knew I really couldn’t do anything about it though, so I went along with it. I’m like okay, let’s do this. But the baby did not want to come out.
Welcome Baby!
After about an hour of trying to push her out, nothing was happening, and the ambulance was called. I lived in Amsterdam in an apartment on the 4th floor, and if you know houses in Amsterdam a little bit, the stairs are really steep. I had practiced because I knew if I needed to get down these stairs while I’m in labor, I’m practicing these freaking stairs! It was the middle of the night in January 15th when the ambulance arrived, and it was snowing in Holland at the time. The ambulance was there and they told me whenever I didn’t have a contraction, I should go down the steps and into the ambulance. And I was like, now! I can do it now! I ran down the stairs and I reached it in time for the next contraction. Apparently, I went out just in my bare feet just wearing a T-shirt. The paramedics told me to stop pushing. I didn’t even think that was possible!
A
During the whole ambulance ride, I’m in the ambulance with 3 men. Men! Three men telling a woman in labor to stop pushing. That is not happening! It’s like, impossible! Anyway, a long story short, we made it to the hospital. I ended up having a cesarean because, despite trying to get her out for an hour, she did not want to come out. My oxygen was starting to get low. My contractions were basically stopping. I felt much better now, which the paramedics said was apparently a bad sign. They rushed me into the operating room and I had a C-section and my daughter was born.
I was really happy to see her, obviously, after she was born, but my recovery was extremely slow. They kept telling me that if I can get up and go to the bathroom by myself, I could go home. After 4 days, that was still close to impossible. I couldn’t move my body. My body was so exhausted that I just couldn’t move it.
At this time, I didn’t know that I have a whole bunch of autoimmune diseases and I just thought, why am I so tired? Why is my body not moving right? With the help of my then husband and my mom, we managed to get me to the bathroom and get me released from the hospital to go home, but as I told you, I was living on the 4th floor with stairs that are this steep, and now I had to get up these stairs. My mom and my then husband literally took my feet and placed them on the next step and I’d pull myself up. We’d repeat this process until I made it up the stairs. They couldn’t carry me because I had just had a cesarean and everything was hurting. Then I was in my apartment in bed where I was just was for 6 weeks before my daughter was born. She was born at 38 weeks and 2 days and then I was in bed for almost another month. I just could not get out of bed.
Something’s Still Not Right……
Once I was home, the midwife came by and said that I should just do it. She insisted more and more that I should push myself to just get out of bed. She said that my recovery was going too slowly. Once again, I had no tests to try and find out what was wrong with me, just all the regular tests they do after you have a baby and they did with my daughter as well. No one was really concerned about why my recovery was so slow and why my mood was so bad.
In the days that followed, psychologists came to my house to check on me. They would sit next to my bed with the midwife and people from all sorts of agencies. There were so many people coming by because they were checking for postpartum depression, but I was cleared and told I was fine. After about 2 weeks they left me alone. I slowly recovered. My bad mood was less, and I lost all the weight that I gained, which was not a lot since I didn’t gain a lot of weight because I couldn’t really eat. But I lost all of the weight from the pregnancy within 10 days after the cesarean.
Then, I started to have a very poor appetite. I was really tired again, but this was more extreme. I knew new moms are really tired because they wake up during the night to feed the baby and everything, but I was deadly exhausted. I couldn’t move. I couldn’t think. I couldn’t eat. I couldn’t even walk. I started gaining a lot of weight, but I didn’t really eat much. It all seemed very weird to me and I started getting depressed.
I started getting hallucinations. I’d imagine I was standing on top of the stairwell with my daughter and in my mind I saw us tumbling down the stairs. I knew this was not happening. Later, when I felt better and I was able to drive again, I would drive to work. While I was driving and focusing on the road, my mind would show me images of crashes happening and me tumbling over with the car. It was just surreal. It was the weirdest thing! Then, I would look in the mirror and I would not see myself. I saw another person. When I saw pictures of myself with friends and family from before I had the baby, I saw a different person. Only the pictures that were taken when I was feeling like this looked like me. I went to the doctor and described these hallucinations. I said I didn’t know what was going on, but this was all very strange and doesn’t feel like this should be happening to me.
The doctor told me to go to the psychologist. I went there and I felt like she really didn’t take me seriously, so I didn’t want to go to her anymore. I wanted to go to another one. My doctor didn’t agree and was really upset with me. One day, I bumped into him in the bakery and it was just very awkward and I was just very unhappy about it.
Taking Back Control
About 7 years ago, I started doing my own research. I was looking into depression and depression clinics. I found a depression clinic in west Amsterdam that looked like it would be a good fit for me, so went back to the doctor and asked him for a referral so I can try to go there. He came back and reluctantly agreed give me a referral letter. I went there, and that was the best thing that I’ve ever done.
My psychologist was just a girl my age that I could speak to on my level. She believed everything I told her. She was even doing research for me based on all my symptoms. She said that she doubted it’s postpartum depression because was about six months after the baby was born, which is really late. She said if it was postpartum depression, I would have had it right away after she was born. She thought the fatigue I had told her about could be chronic fatigue syndrome, and advised me to look into that. She worked with me based on her diagnosis and told me talk to my doctor about it, and see what you think. I worked with her for about three years every week. While that did help me, it didn’t solve the problem. We worked on positivity exercises, how to make my world a little bit smaller, mindfulness exercises, and how to come back to myself and my core, but something was still off.
At some point, I think about 6 months into my work with her, they did a test, and it turns out that my thyroid completely stopped working. Zero. It did not do anything anymore. That explained my hallucinations, my depression, my gaining weight while I wasn’t eating, and all of these previously unexplained symptoms. They gave me the thyroid medicine, Synthroid. I started taking it and the first 6 months, I started to feel much better and after a year, I was almost back to my old self. I still didn’t really lose the weight, which was kind of weird and my moods were still on and off. I was still exhausted and in a lot of pain, but it was much better than it was before.
Years later, I was actually doing research for the Unchargeables Chronic Illness Community to look more into thyroid issues. Back then, the community was more for people with fibromyalgia because I had fibromyalgia and so that’s what I could support people in. Then I realized, well, I have this thyroid thing as well. I take this pill every morning, but there must be other people with thyroid problems like me. I thought maybe I could support them too by sharing my story and just offering them some support.
It’s a Miracle!
I was doing research about thyroid issues, and I stumbled upon this thing called Hasimoto’s Disease and miracle babies. I was surprised and decided to look more into this. There were these stories of women who were pregnant and had all the same symptoms I had that didn’t experience all the stabbing pains in their stomach, but their babies didn’t make it. Only about 10% of these babies survived and actually were born into the world and those were called miracle babies. I’m like, oh my god! I think my baby’s a miracle baby!
By this time, she was already three or four years old. I started looking at all the symptoms and the treatments and everything. I read about a whole bunch of people who were taking the Synthroid medication, but this was just not enough for them and this was not making them feel any better. There were a lot of people that reported that natural thyroid medication made them feel so much better.
I started looking into that and researching more. I read medical books about the thyroid and about Hashimoto’s and understanding everything better and then I discovered this: Thyrovanz. This saved my life! When I switched from Synthroid to Thyrovanz, I got my life back. I wasn’t so tired anymore. I didn’t have bad moods and mood swings all the time, The fatigue and pain and just not happy about life improved. I could move. I could walk. I felt so much better! Today, my daughter is now a happy 7 ½ year old and we are super-happy together.
The lesson I got from this is even though your doctors may know a lot and they studied for a very long time to become a doctor, do your own research. Be your own advocate and make sure that your medical treatment is correct for you because every body needs something different. Do your own research and try to work with your doctor.
Adrian looked around the waiting room, noting that he was
easily the youngest person there. Most of the people sitting in the room were
easily a decade older than him, probably more, and that all of them were women.
This made him embarrassed. He knew that most people seeing a rheumatologist
were women and probably older, but seeing it in person was different.
Feeling uneasy while waiting
Adrian
tried to ignore his embarrassment by looking at the decorations on the wall,
which was all still life photographs. He had to suppress a snort, of course
that’s what was on the walls. Just like every doctors office, there has to be
boring, framed photos of nothing interesting.
“Adrian
Thompson,” the nurse called.
Standing up
slowly, Adrian followed the nurse to the exam room in the back. Even as he
followed her, he couldn’t keep up and had to walk significantly slower than her
because the pain in his joints was so bad. He immediately sat down in the lone
chair in the corner when he reached the room, ignoring the exam table.
“What
brings you in today?” the nurse asked.
“I’ve
been having pain and swelling in my joints, muscle pain, fatigue, and stiffness
when I wake up in the morning or if I move after I’ve stayed in the same
position for too long” Adrian replied.
She wrote
everything down, looked at him quizzically, and said the doctor would see him
soon. Adrian looked around the room after she left. He noted several arthritis
posters, a osteoporosis poster, and some three dimensional models of joints on
the counter.
The doctor
30 minutes
later, the rheumatologist, Dr. Erikson, entered the room. He read the notes
that the nurse had made and asked what brought him in. Adrian repeated exactly
the same thing he had said to the nurse.
“Hop
onto the exam table,” he said.
Adrian
flinched several times when Dr. Erikson pressed on points that hurt, then
ordered some blood tests and offered to prescribe him painkillers for the
intervening days until he saw him again.
“No,
thank you,” Adrian said, “I am an addict in recovery, I have 60 days
clean and sober today, and I don’t want to risk going back into active
addiction.”
“Good
for you getting sober,” Dr. Erikson said. And with that, he left the room,
telling Adrian to make another appointment in 30 days.
Second appointment
The
following 30 days were agonizingly painful and long. Adrian desperately wanted
to know what was wrong, because something was obviously wrong. The constant
pain was something he didn’t think he’d ever get used to, almost worse than the
pain was the fatigue that was making it hard to be a functional human being.
Adrian could barely remember what it felt like to wake up feeling rested.
Returning
to the doctor’s office, Adrian waited an hour just in the waiting room just to
wait another hour in the exam room. When Dr. Erikson finally, finally, showed
up, Adrian became hopeful that he might finally have an answer. He was
disappointed.
“All
your labs came back negative, there is nothing physically wrong with you,”
Dr. Erikson told him.
“So
what happens now?” asked Adrian.
“Here
is the business card of a good psychiatrist in the area. I’d recommend talking
to her and getting on the proper medication” the doctor told him.
Adrian was
so upset he couldn’t speak. Even a doctor, the best rheumatologist in a 50 mile
radius, thought he was making up the pain and various symptoms he was
experiencing. Adrian numbly walked out of the office and got into his car. When
he closed the car door, he finally broke down. He wasn’t crazy, was he? He
didn’t think so. But either way, he pulled out the psychiatrist’s card and made
an appointment.
Continuing the search for awnsers
Over the
next year, Adrian searched for an answer. He saw the psychiatrist, who referred
him to a therapist and a different rheumatologist, that rheumatologist referred
him to a different psychiatrist, who told him to see another rheumatologist. He
didn’t have anyone actually believe he was actually in pain until he finally
gave up on specialists and saw his general practitioner.
Adrian
told his general practitioner his symptoms, telling him about all the struggles
to find an answer, and he watched the doctor’s eyes light up. Adrian knew then
that he finally found a doctor who completely believed him, and he was
ecstatic.
“Here’s
an order for more blood tests and an order for getting your hands and feet
x-rayed,” Dr. Johnson said, handing Adrian the stated orders, “Come
back in two weeks and we’ll review the results.”
U.S. Army Spc. Juan Hernandez, Jr., McDonald Army Medical Center U.S. Army Medical Activity medical laboratory technician, draws a blood sample from a patient at Joint Base Langley-Eustis, Va., June 26, 2017. The JBLE lab technicians perform over a million tests annually and study the hematology, coagulation, chemistry and microbiology of the samples. (U.S. Air Force photo/Staff Sgt. Teresa J. Cleveland)
Adrian
immediately went to get his blood drawn, and two weeks later he was back at the
office, eagerly awaiting the results.
The results
“Adrian
Thompson,” the nurse called. Adrian got up and followed the nurse into the
exam room, and 20 minutes later Dr. Johnson came in.
He spent
five minutes looking at the results from Adrian’s tests, and then looked at
Adrian.
“I know
what’s wrong,” Dr. Johnson told Adrian.
“What?”
Adrian asked eager to finally have an answer.
“I
have two diagnoses for you. The first is about the joint pain. You have no
markers for it, but you have what’s called seronegative rheumatoid arthritis,
based on the high amount of inflammation and the damage to the joints in your
hands and feet. The second is related to the muscle pain, and there’s no
specific test for this, but I believe you also have fibromyalgia.”
Those were
exactly what Adrian thought he had from his research, but having confirmation
was both a relief and a weight on his shoulders.
“So
where do we go from here?” asked Adrian.
“I
will give you a copy of the results and write a diagnosis on a prescription
pad, and I’ll give you a card for a rheumatologist. He will know better on what
medications to put you on, but I’ll give you a couple of things to treat the
conditions while you wait to see the rheumatologist.”
Finally getting a diagnosis
Adrian
went home in a daze. As soon as he got home he called and made an appointment
with the recommended rheumatologist. With that done, Adrian got back into his
car and began the hour and a half drive to the beach, the place that always
seemed to calm him. Since it was still winter and he was in Washington, Adrian
made sure to take a heavy coat with him. He tried not to think much on the
drive, and to appreciate the beauty of the forest around him.
When he
reached the beach, he put on the coat and began to walk along to beach right on
the edge where the forest ended and the beach began. The beauty of the place,
with the rock cliffs in the middle of the ocean that somehow had trees on top
the constant green of the forest, and the drift wood that had washed up on
shore. This place always brought Adrian a sense of calm. Adrian got to be alone
with his thoughts since it was nearly deserted because it was no longer tourist
season.
As Adrian walked, he thought about how much his life would
change because of the two diagnoses he was just given. He didn’t know if he
would be able to continue to work at his goals, if he would be able to work as
a nurse like he was studying for. He didn’t know if he could continue to live
in this beautiful area, because the weather always hurt his joints. But most of
all, Adrian thought about how scared he was about the future. He knew what
advanced rheumatoid arthritis could do to joints. He had seen the pictures online. Adrian even
let out a couple tears as rain began to fall, counting on the rain to hide his
tears from anyone who might look at him.
Adrian
knew his life was about to change, and as he got back into his car to begin his
drive home, he tried to just be grateful to finally have an answer after over a
year of searching and allow the future to turn out however it’s meant to.
Chris Thoman is a 23 years old, college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. Follow him on Instagram
When’s the last time you were really honest with your doctors? Never? That used to be me.
Anyone with any type of chronic pain knows that there are better days, bad days, and the worst days. If you battle chronic pain, I’m also betting you minimise it to those around you. You put on a brave face and don’t reach out for medical support anywhere near as often as you should.
I’m very much the same. I rarely reach out to my team of medical professionals unless I really, really need to. This is partly because of numerous negative experiences in the past and partly because I don’t want to be a bother. However, a month ago I went from feeling as well as I ever will be, my version of normal, to feeling worryingly unwell in just a matter of hours.
A Flare-Up Like No Other
Not a lot scares me when it comes to my health. To my husband’s frustration, I continue to minimise even the severe symptoms and won’t admit when it’s getting to be more than I can handle. However, on this day I was genuinely scared by this sudden onset of pain in my ankles (later spreading to other joints). This, and the other symptoms that I had, felt like no other flare up I’d ever experienced. So I reached out to my GP, but failed to get past a particularly obstructive receptionist. I didn’t have the energy for a battle, so I accepted her dismissal and ended the phone call.
Several hours later I had grown much worse, so I called back for an emergency appointment. I was refused this, so I asked for a GP to ring me back. After several requests, I was granted this. To cut a long story short, my GP was unhelpful at best and entirely dismissive at worst, which was surprising as she had always been one of the better ones. I was refused stronger pain medication and told to wait until morning for a blood test.
A short time later I had become utterly consumed by the pain and was genuinely becoming very concerned. I called an out of hours service who wanted me seen immediately, given that I have a disease which means my immune system isn’t working. I’m also on a lot of complex medications which can cause issues of their own (as well as suppress my immune system). It turned out theirs was the right call. I ended up in hospital for a week while the doctors tried to get my pain back under control and work out what on earth had happened to cause such a rapid decline in my health.
Never Was A Story Of More Woe?
Before I share what happened next, I wanted to just pause to share the purpose of this article. Now I know you may be thinking this is a tale of woe and misery. But it does have a positive ending. I’ve chosen this experience to write about because it’s one I come across time and time again in the chronic illness community. I hope to encourage you to speak out the next time it happens to you…in whatever form it may take.
So, there I am stuck in hospital, exhausted but in too much pain to sleep. I was trusting the medical professionals around me to care for me and get to the bottom of what was going on.
Issue #1: You Can’t Still Be in Pain!
The first issue that cropped up was several nurses trying to tell me that the morphine MUST be stopping my pain. They questioned how I could possibly still be in agony while pumped full of IV morphine and slow release morphine. I couldn’t answer that; I just knew I was still in a lot of pain even with all these drugs in my system. My rheumatologist later told me he wasn’t surprised that morphine only just took the edge off the pain because it isn’t really designed for this type of pain. Sadly, there is currently no alternative.
Issue #2: Oops…
The second issue that cropped up was that the hospital delayed contacting my rheumatologist, despite my numerous requests because I knew he would know what to do. When they did eventually contact him and get his recommendation, which was steroid injections to try and get the inflammation causing the pain under control, they accidentally administered the injections twice! Thankfully it did me no harm, but it was far from reassuring.
Issue #3: A Ridiculous Diagnosis
The third, and perhaps most important issue, was when a junior doctor decided I didn’t have Rheumatoid Arthritis. Unknown to me at the time, she had checked my bloods. (My blood tests are different from many of those with RA because I am seronegative). Despite there being a wealth of information on file from my specialists, she decided she would interpret my bloods with no experience of autoimmune or inflammatory disease. She concluded that I didn’t have Rheumatoid Arthritis at all. What she did conclude was I must have simultaneously broken both ankles without realising. Go ahead, you can laugh. I did when I later found out because it was so utterly ridiculous. However, many of you with a chronic illness will know this type of experience is not unusual, which is no laughing matter.
At the time this junior doctor was “treating me,” I had no idea about any of the above. She lied and told me the Rheumatology department had requested x-rays of my ankles. I went along with this because it wasn’t unreasonable. I had the x-rays despite crying with pain trying to bend my feet into the correct position for the radiologist. The doctor later made a passing comment that my x-rays showed I hadn’t broken my ankles, which I thought was odd, but was too exhausted to think more about it.
The search for the cause of this crazy pain continued. Eventually I got so fed up, I called my rheumatologist from my hospital bed and got an emergency appointment with him the following day. It was only as I was being discharged that following day that a doctor came to apologise to me. I had no idea why she was apologising until she explained the junior doctor who requested the x-rays had been reprimanded for requesting them and for jumping to incorrect conclusions about my diagnosis.
Speaking Up
Normally, I would have smiled and said it was fine and let it go, because I have the utmost respect for medical staff. They have an incredibly challenging job, and I understand all doctors must learn and knowledge comes with experience. But this time something stopped me, and I called the doctor back and asked if I could speak with her. I spoke more calmly than I felt when I told her that the care I had received in her hospital was well below the standard I expected. I highlighted several issues (some not included in this article) that I was unhappy with.
Most importantly, for the first time in five years, I then went on to tell her honestly how it feels when medical professionals don’t believe you or your pain levels and the damage that can do. It was an emotional conversation, but by the end I was so glad I had done it. A doctor heard, for perhaps the first time, how it feels to be a chronically ill patient and how much harm it can do when doctors don’t believe us. She appeared to take it on board and discussed action she would take to help other staff understand more about invisible illnesses and chronically ill patients. I hope it made some difference that I spoke up; it certainly helped me.
My rheumatologist worked out that the reason for me being so poorly was an infection, which had also caused a drop in my temperature and issues in my liver. The hospital had all this information, but because there wasn’t an obvious cause, it seemed easier to see me as a hypochondriac.
Your Voice Matters!
The point of writing this article was because I know so many of us with invisible or chronic illnesses regularly face doubt from so many people. It is incredibly hard when you feel those most qualified to help you don’t believe you. I want to encourage you to speak up about this. Doctors are humans, too, and we don’t need to fear them. They make mistakes and don’t know it all. They can learn from us as much as we can from them.
Working together with your doctors is vital to your mental health, as well as your physical health. Never be afraid to disagree with them, educate them, or be honest with them if their attitude is hurtful. In my experience, the best, most respected, and knowledgeable doctors are those who listen to and learn from their patients.
It is so important to be actively involved in your own treatment. You know your body best; don’t afraid to speak up when something concerns you. An honest conversation may just mean a better relationship between you and that doctor, or a better experience for a future patient.
Thanks for reading, and don’t forget: your voice matters.
About the Author:
Rachel is a 29-year old Chronic Illness blogger at www.whatapain.co.ukliving in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Rachel is passionate about challenging stereotypes and disability discrimination. She is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.
Several hours later I had grown much worse, so I called back for an emergency appointment. I was refused this, so I asked for a GP to ring me back. After several requests, I was granted this. To cut a long story short, my GP was unhelpful at best and entirely dismissive at worst, which was surprising as she had always been one of the better ones. I was refused stronger pain medication and told to wait until morning for a blood test.
The first issue that cropped up was several nurses trying to tell me that the morphine MUST be stopping my pain. They questioned how I could possibly still be in agony while pumped full of IV morphine and slow release morphine. I couldn’t answer that; I just knew I was still in a lot of pain even with all these drugs in my system. My rheumatologist later told me he wasn’t surprised that morphine only just took the edge off the pain because it isn’t really designed for this type of pain. Sadly, there is currently no alternative.
The third, and perhaps most important issue, was when a junior doctor decided I didn’t have 
Most importantly, for the first time in five years, I then went on to tell her honestly how it feels when medical professionals don’t believe you or your pain levels and the damage that can do. It was an emotional conversation, but by the end I was so glad I had done it. A doctor heard, for perhaps the first time, how it feels to be a chronically ill patient and how much harm it can do when doctors don’t believe us. She appeared to take it on board and discussed action she would take to help other staff understand more about invisible illnesses and chronically ill patients. I hope it made some difference that I spoke up; it certainly helped me.
Rachel is a 29-year old Chronic Illness blogger at