Throughout a person’s life they face multiple events that are potentially life changing. These changes can be stressful and difficult to come to terms with. It can be something small or more significant, for example a relationship breakup, a birth, death or being diagnosed with a chronic illness or disability. Change can be extremely difficult to process. A person might begin to feel sad about what’s happening, they might feel hopelessness, loose interest in anything they normally love doing, as well as crying unexpectedly. This inability to cope with change is called Adjustment Disorder (AD). Today as part of Mental Health Awareness Week, Tylia is going to share her story of how she overcame on Adjustment Disorder
When It All Began
It all started last March I was looking out the window while driving to a regular doctor’s appointment. It was a gloomy morning. I looked at the road and saw all the cows and farms on the country road that led me to the Doctors Office.
I turned to my mom and told her I had been feeling more sad than usual and that I needed to talk to the doctor about it. My mom lowered the volume of the radio. She looked worried, like any mother would. She said it probably causes we just moved to Clermont not that long ago and I don’t know anybody here
Little did she know it was more than that. It was the fact that I was feeling trapped in my body more than usual due to my condition. Cerebral Palsy affects my mobility and my ability to get around. I’m constantly confined to a wheelchair twenty-four hours a day although I’m very sociable and I go out with friends and I’m a college student I tend to always feel like I’m a glitch in video game still trying to find my way. Luckily, I found my passion for writing at a young age, after the death of my friend. But all the sudden the one thing I loved the most since I was a teenager didn’t help me during this time. Although on the outside I seemed to have it all, on the inside I was secretly breaking down each day. Getting angry at my situation and how things weren’t working out in my life at the age of twenty-two.
Seeking Professional Help
I told my doctor about how I was feeling, and she referred me to a mental health doctor. In the meantime, me she prescribed Fluoxetine to help with my anxiety and depression. I Needed to take it every single day, cutting the pill in half and placing it in my orange juice every morning.
At first, when taking Fluoxetine, it helped focus a lot and my emotional state. I was doing okay but after a while, I would become hungry and would want to eat junk food every few minutes while being focus on what I was doing but after a while I started to have the mindset that I needed to take the pills to be happy. I felt like I no longer had control of my life. As someone who is an inspiration to many people, I couldn’t lift myself to see a happy light in my life again.
A few months passed and I finally got to see a therapist. I was very open about feeling trapped in my body and the difficulty of being an adult with Cerebral Palsy. At the end the therapist said, “based on everything you told me I’m going to diagnose you with anxiety and Depression, Adjustment disorder.”
At first, I was crushed. How could someone like me, who has everything going for her, have a disorder like AD at the age of twenty-two? I spent the next couple weeks angry at the world. The Fluoxetine was taking a toll on my body. I started to get pimples all over my body. I was facing this major challenge in my life my now ex-boyfriend walked out on me. That caused me to get more depressed to the point where I stopped eating, writing, and going to school. I basically stopped my life.
The Turning Point For My Adjustment Disorder
Until I woke up one day, with the support of my family and my friends. I told myself I wasn’t going to let AD to take over my life anymore. I wasn’t going to take Fluoxetine anymore either.
As of September 8th, 2018, I haven’t taken a single pill and I’m much happier. I’m now an advocate for mental health and I started to write again. I completed my second novel and I’m continuing my studies.
My message to anyone struggling with mental health is you gotta keep on stomping regardless of the darkness you see they’re always a light.
About The Author
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
May 12th is Fibromyalgia Awareness Day. Fibromyalgia is a condition where the person feels widespread pain throughout the body, along with other symptoms such as Chronic Fatigue, Brain Fog and a host of others discussed below. Fibromyalgia is not an inflammatory condition but is thought to be a misconnect between the brain and it’s pain receptors.
The Sick Girl
When I was younger, I struggled with my health a lot and was known as “The Injured Girl” or “The Sick Girl”. I was always teased because I was sick and missed school a lot, even though I was able to keep up with my grades. I had teachers and coaches say I was just doing attention seeking behaviours and not truly in pain. I hated to do water activities because the water balloons or pump action water guns hurt so bad, the cold water would make it worse.
I started to lose some friends in junior high because they didn’t want to hang out with a “Debbie Downer”. This was the beginning of me trying to figure out that if what I was feeling was what everyone else experienced and I was just not handling the pain very well, or if I was experiencing pain that wasn’t supposed to be normal.
My first time of realizing that I was struggling with pain and my body not really working was when I was in PE in high school. My body was in constant pain and certain textures were bothering me. I had a doctor notice something with my back and that was the first time I had any validation from someone other than my parents that I was in pain.
The Diagnosis of Fibromyalgia
Two years and a half years after that my parents took me to a specialist in Salt Lake City to try to find out what all was going on with my body and see if there was anything that could be done. This was the first time that I had ever heard of fibromyalgia. I was also diagnosed with lupus and rheumatoid arthritis as well during that visit (I will tell my story about these two later, for now I want to focus on fibro). The doctor just told me what he was diagnosing me with and sent us on our merry way back home
I didn’t really think anything of my diagnosis and didn’t really think of what that meant at the time and what it could mean in the future. At the time, I was just glad to finally have a name or names to go along with my pain and that it wasn’t just all in my head. I had thought that it would have made my life a little easier and that people would stop calling me attention seeking, but unfortunately, that wasn’t the case. I still lost friends because I wasn’t getting better after my diagnosis. I had a few tell me that I was depressing because I would tell them what my body was feeling like and being honest with my limitations.
Symptoms
“Common symptoms include: widespread pain, jaw pain and stiffness, pain and tiredness in the face muscles and adjacent fibrous tissues, stiff joints and muscles in the morning, headaches, irregular sleep patterns, irritable bowel syndrome (IBS), painful menstrual periods, tingling and numbness in the hands and feet, restless leg syndrome (RLS), sensitivity to cold or heat, difficulties with memory and concentration known as ‘fibro-fog’, and fatigue. The following are also possible: problems with vision, nausea, pelvic and urinary problems, weight gain, dizziness, cold or flu-like symptoms, skin problems, chest symptoms, depression and anxiety, and breathing problems.”
This chronic illness is one that many doctors don’t agree that it is a chronic illness. My first specialist diagnosed me based on a lot of my symptoms and I was glad to have a diagnosis. I recently started seeing a new doctor because I had a flare and we decided to see what was flaring up to see if we could try and get it under control.
This is the first time I have ever had a doctor tell me that they do not believe that fibromyalgia is a diagnosis. He was honest in saying that he believes that fibromyalgia is just a doctor’s way of saying “I don’t really know what is wrong with you, but since your nerves are causing pain I will just call if fibromyalgia.”
In some ways, I agree with the doctor because some doctors just give a random diagnosis because they want to just not be asked to try and find what is wrong. In other ways, I disagree. I believe that it is a diagnosis, I believe that trauma or other chronic illnesses can trigger it, but I do not believe that it is not considered a chronic illness. Sometimes we, chronically ill patients, have to make a choice.
The Struggles
Some choices are whether to swap doctors to get the treatment and communication that we need/desire and other choices are whether we agree with the treatments we are given. I have decided it is in my best interest to stay with my new doctor because he wants to help me and keep open communication. I don’t agree with the diagnosis being “taken away” from me, but he is trying to treat the cause of the flare and not just give medications that are “band-aids” to mask the symptoms. For fibromyalgia awareness, I am bringing to light only some of the struggles that I am going through.
Conclusion
What I am experiencing is not what others are experiencing with the same diagnoses as I have. We also choose different treatments based on how our bodies respond to them and what our lives are like along with our own personal end goals. I am personally glad that my husband, doctor, support team, and I have agreed upon a treatment plan that will help me reach my own goal with my quality of life. I am glad that it will not take away my ability to write blogs, start video blogging, and work (as long as my body will allow).
Long QT Syndrome is a rare heart condition in which the heart takes longer than normal to repolarize (recharge) after a heartbeat. This can lead to palpitations and/or potentially dangerous arrhythmias, leading to blackouts/fainting, seizures and death. Long QT Syndrome is one of the leading causes of sudden cardiac death in otherwise young, healthy people.
Elastic Heart
I was seventeen years old when I started to experience disturbances with my heart rhythm. My heart rate would ping from one extreme to the other, shooting up at inconvenient times, or it would slow down to the point that I had to sit and wait at the top of the stairs while I waited to feel less faint.
Thanks (but no thanks) to the frequency of these episodes, it was pretty easy for my doctors to prescribe me Propranolol to control my heart rhythm, although at this point I was not yet diagnosed with Long QT Syndrome. ECG monitoring pointed to episodes of supraventricular tachycardia (SVT for short – a faster than normal heart rate) and bradycardia (resting HR below 60bpm in adults) which was briefly controlled by the medication. Off I went to drama school with my medication, a high dose but it was working.
Eventually, the symptoms started to come back, and then they got worse. At one point my chest pain was so bad and continued for a few days so my best friend and I got the Tube to the A&E department, where we spent seven hours (she hates hospitals) and they didn’t find anything new, just the standard extra electrical activity from my SVT. Another time I simply passed out while walking down the stairs and suddenly I was on the floor with a huge gash in my ankle. We started to lower the dose of the Propranolol, and eventually, the cardiologist decided that there was nothing we could do for now as medical treatment was unsafe, but it wasn’t bad enough to warrant any other treatment.
My heart will go on (and on…)
I continued for a few years just living with a random heartbeat. It was annoying, but I got used to it. Most of my A&E visits were not cardiac related, as around the same time the rest of my health conditions started to get worse. I had ECGs (electrocardiogram – tracing of the electrical activity of the heart) consistently enough to be fine with GP input.
Around the age of 23, my SVT really started to play up again and I had a few A&E trips. One time a nurse somehow managed to get the cannula straight through my vein, which he only noticed when I pointed out that my blood was dripping onto my coat and that I was about to pass out. At the time I had a housemate who would give up her time to come and sit with me and escort me to the toilet (not her favorite part of the experience) and buy snacks for when I was finally allowed to eat again. Every time, it was the same thing – it’s your SVT, it’s good you came, if it gets worse come back again.
So we continued this game. In the summer of 2018, I moved into my own apartment, which was great. My best friend and my mom helped me paint it. A couple of weeks later I experienced some horrible chest pains that were making me almost constantly dizzy, so after a couple of days, I called 111 who sent me an ambulance although by now it wasn’t quite so bad. I wasn’t having a heart attack or anything life-threatening, so they said I don’t have to go to the hospital, but they asked me “did you know you have a prolonged QT?” – I did not. I didn’t even know what that really meant. They advised me to see my GP urgently, but call the ambulance if it got worse again. I saw my GP the next day, who gave me similar advice – I was due to see a new cardiologist in January.
Continuing Problems
A month later, I woke up just after midnight with the worst chest pain I had ever experienced. I honestly thought I was about to die. I literally reached for my phone and was ready to text my family group chat that I love them, my colleague that I wasn’t coming into work because I was dying, and call myself an ambulance. I was too dizzy so I sat up for a few minutes trying to breathe, grasping at my chest in tears. For whatever reason, I decided to put a halt on my plans. In retrospect, calling the ambulance would have been the correct thing to do so they could see exactly what was happening. I did text my mom, just to say that I had really bad chest pains and that I was going to see how things go.
After about an hour, in which the pain didn’t subside but I did feel calmer, I got up and slowly walked around my apartment to see if the movement would help. I had a glass of warm milk, and did my basic obs (yes, I have a blood pressure/HR machine by my bed) and decided I was too tired to deal with the hospital. I was too scared, too wired, and too chest pain-y to sleep. My breathing wasn’t the best but manageable. I decided it was safe to close my eyes around 5am, and after two hours of sleep I got up and went to work, where I felt okay at my desk but during a meeting kept fading in and out with a spectacularly low HR. 28bpm is not normal for me when awake, even if the meeting is boring.
I drove home and after a few hours I decided to call 111 for advice, and once more they sent me an ambulance. I sat in my recliner while they looked at my medical file (I have a physical copy at home), put electrodes on me and petted my cat Lily who watched the three paramedics suspiciously. They decided to take me to the hospital, and I’m proud to say that was only my second time in an ambulance. Not my planned Friday night, but oh well. The A&E nurse did an excellent cannulation.
Diagnosis
After all my tests were done, an on-call cardiologist came to see me. She ordered some medication for the pain and a chest x-ray, just in case. Eventually, she came back and that’s when I got diagnosed with Long QT Syndrome. She told me that I really ought to be coming in as soon as I feel these chest pains and extreme changes to my HR, which is fair enough. This is important advice for anyone even without a heart condition – it is far better to be safe than sorry in these cases.
I saw my GP, who gave me similar advice and to avoid stress and strenuous exercise. My old NHS trust moved my cardiology appointment to February which was inconvenient but I felt like I knew enough to not worry too much about this. A lot happened with my other health conditions at this time but eventually, it was time for my cardiology appointment. Guess what? Because it was a different NHS trust that I’d left when I moved, they had nothing about my new diagnosis. But the cardiologist did laugh out loud at how quickly my HR changed. Thanks, I find it funny too.
I finally saw my new cardiologist this April 2019 (I didn’t want to see the other one again) and he seemed pleased with the management of my heart conditions, apart from one thing.
“I don’t want you swimming,” he said seriously when I described what kind of activities I do with work. “Don’t do it. You can go in shallow water if you are accompanied. But don’t swim.”
Well… I like swimming. Even with a bad shoulder, a useless ankle and crappy legs, I can swim well. I enjoy going swimming at work (I teach at a SEN college) and I love being in the water. Sure, the ocean freaks me out, but I love swimming in it on holiday. Weirdly, this is probably my least favorite thing about my heart condition. I understand why (if my heart stops in the water, I drown, if I have palpitations in water, there’s too high of a risk I can’t get myself out) but I just want to swim. Shallow water is boring. Swimming is the one thing that despite the restrictions my health puts on me, I could actually manage doing and felt worth the extra pain and fatigue.
Nothing Breaks Like a Heart
Aside from no swimming, and not doing strenuous exercise, Long QT Syndrome can be strange to manage. After doing my research and seeing that sudden loud noises can trigger it, I realised that many of my night episodes were probably because of my phone vibrating on my bedside table – not particularly loud, but in the silence, it does make me jump. I’ve had the vibrate function switched off for about five months now and the night episodes have decreased. Weird adjustment, but it works for me.
There is a lot of monitoring involved, as there always has been since I was seventeen. I hate the goo of the electrodes, and I hate when you walk into the ECG room and its cold and you have to take off your bra. I hate the ambulatory ECGs (worn for 24 hours or a week) because they’re itchy and you can’t take a bath (at the moment I can only take baths, as showers make me really dizzy). I don’t mind echo’s (echocardiogram – an ultrasound of your heart) because I find it cool that I can hear the whoosh-whoosh of my heart. I’m used to the blood tests, which my mom usually does for me (she’s a nurse) so these don’t bother me in the slightest.
A big struggle has been medical management. I have a whole load of other conditions which require medication, so I had to have a long review to decide what was worth the risk and what was not. The problem with Long QT Syndrome is that anything or nothing at all can set it off, so medications that interact with the electrical activity of the heart might just be the thing that top it off. On the other hand, without some medication, I don’t function properly, which is also a risk.
Although this all can sound scary, it’s not. Possibly because I got used to the diagnosis and the warnings a long time ago. The people at my work are incredible and there is an Occupational Health nurse who makes sure that I am supported at work, and my colleagues have adjusted to my humor about my unfortunate health. My friends likewise make sure we can do things together (so if I can’t go swimming, I can join them later for tea) and laugh at my jokes. I think that’s an important part of any illness, disability or condition – having people, whether that is your family, friends, or colleagues – who keep you included and feeling like yourself.
Long QT Syndrome really isn’t the best. While I can rock an ambulatory ECG monitor with a Calvin Klein crop top, the reality is not so pretty. Fortunately, I have a wonderful support network, some great doctors and the wonderful NHS 111 service at hand.
About The Author
Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.
Pancreatic cancer is one of the fastest growing cancers in North America. According to the American Cancer Society, around 3 percent of all cancers in the United States are pancreatic cancers. In 2018, they expected around 55,440 people to receive a diagnosis of pancreatic cancer.
Fast Friends
Nobody thinks about Pancreatic Cancer when they meet someone new. The memory of the first time we met Sweet Lou is as clear as yesterday. There was no way to know then that he would be taken away so quickly. Like so many things in life what seemed like a negative situation turned into something positive. We met some of the best humans we have ever known when a landlord defrauded us. Lou was one of those people.
Determined this landlord situation was certainly a sign that the recent relocation to Colorado was doomed from the beginning caused much tension in my marriage. Desperation set in to move back to Georgia where the support of parents and siblings would be certain. Plus I was surprised my husband decided to share this personal information with people we had just met – that caught me off guard. But, when I stared into the friendly faces of our new neighbors that night I told the truth. Raising kids is hard without family around. Sweet Lou said, “We’ll be your family.”
As you may have guessed this story does not have an entirely happy ending. As I write this now Lou has been gone almost a year.
The Job of the Pancreas
Photo Credit : My Fit Station
The pancreas is a spongy, elongated pear-shaped gland organ. It is located in the abdomen and helps your body digest food and regulate insulin. The pancreas excretes digestive fluids into the intestines and works with the liver and gall bladder to help break down foods. The most important function is to regulate the insulin in your body. “Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys (Columbia University, 2019). Most people probably do not think much about the pancreas unless they are a fan of Patrick Swayze or Alex Trebek.
Pancreatic Cancer Statistics
Pancreatic Cancer is the 3rd leading cause of cancer-related deaths in the United States
More people die from Pancreatic Cancer than from Breast Cancer
The average lifetime risk of Pancreatic Cancer in the US is 1 in 64
The five-year survival rate for all forms of Pancreatic Cancer is just 7%
The one-year survival rate for all forms of Pancreatic Cancer is 20%
Death rates for all cancers have declined except for Pancreatic Cancer which has remained the same in the last decade.
Every day in the United States 155 people will be diagnosed with Pancreatic Cancer. Statistics can make it easy to forget that each one of them represents a human being: a father, mother, son, sister, husband, or friend like Sweet Lou
Behind the Pancreatic Cancer Statistics
When it comes to cancers two questions are usually on everyone’s minds. What are the risk factors? And, how do I prevent it? There are certain risk factors for Pancreatic Cancer that you cannot control. Some are a possible genetic predisposition, exposure to certain chemicals at work, age, gender, race, diabetes and chronic pancreatitis. Some factors within our control are thought to contribute to an increased risk and include obesity and tobacco use. Others such as diet, a sedentary lifestyle, infection, or coffee and alcohol consumption are not as clearly connected.
Most advocacy groups will point out that a healthy lifestyle may reduce your risk of getting certain types of cancers. This point should not be mistaken to mean that any individual is responsible for their personal cancer diagnosis. At the end of the day we are all just trying to balance our lives between what is good and what is good for us. In Lou’s case he was not at a high risk and was in generally good health.
Warning Signs
One of the most difficult aspects of Pancreatic Cancer is that there are few early warning signs. This is complicated by the rapid rate with which the cancer spreads. The symptoms are vague: pain in the abdomen or back, weight loss, jaundice, loss of appetite, nausea, changes in stool, pancreatitis or recent-onset diabetes.
Sending your husband to the doctor every time he has a stomach ache (as I have done the past year) is not very practical. Here is where it is important to know your body. Pay attention to what is normal personally. If any of the known risk factors or family history is a possibility it is better to err on the side of caution. The Mayo Clinic recommends a person “see your doctor if you experience unexplained weight loss or if you have persistent fatigue, abdominal pain, jaundice or other signs and symptoms that bother you.”
Diagnosis and Treatment
Imaging in the form of CT, MRI or PET scans are the first steps a doctor will probably take after a physical exam. There are endoscopic procedures if a biopsy or closer look is necessary. A blood test called CA-19-9 is available but is known to be fairly unreliable. Most doctors will record levels before and after treatment, none-the-less. Again, it is important to remember the success in beating Pancreatic Cancer depends in large part on early detection. So, get to the doctor if you suspect a problem.
Once Pancreatic Cancer is diagnosed the doctor will attach a stage level between I and IV to assign a seriousness of the disease. The lower the stage the better. The most effective procedure is thought to be the specialized surgery called the Whipple procedure. Other surgeries including the removal of the entire pancreas are sometimes done. Chemotherapy and radiation are other traditional methods of treating all cancers including Pancreatic Cancer. There are many clinic trials ongoing right now that have shown to increase a patient’s lifespan.
Pancreatic Cancer Palliative Care
Palliative Care is the next step. This is the stage a patient and their family reside in between ‘there is nothing more we can do’ and hospice, or end of life care. Palliative care encompasses a wide range of modalities designed to help a patient and their loved ones cope and be as comfortable as possible. They may also help a patient consider whether actively pursuing trials is a good idea. Alternative therapies like acupuncture may help with pain. Therapies like art and music help manage emotions. And, spiritual counseling can help many manage the complex emotions that accompany a terminal diagnosis.
Pancreatic Cancer Unspoken Survivors
The survivors of pancreatic cancer are most often those left behind when a loved one passes. When I reached out to Lou’s Lady here is what she offered:
“I guess I would say do your research, get second opinions or third. Utilize clinical trials as they really do prolong life. But weigh the pros and cons when it gets towards the end as sometimes keeping someone alive longer isn’t more important than spending quality time. Go on vacation or do things that are important to you and your family. See people and make memories when you can. But don’t be afraid of offending people by setting boundaries of what the patient and caregiver can manage. Enjoy the time you are given and say everything you need to say. That goes both ways. The time you are given goes by quickly.”
Pancreatic Cancer Means Saying Goodbye
For my part, I have to add that one of my greatest regrets is not getting back to Colorado in time. Our family did eventually make our way back to Georgia. Our daughter is a Chargie with POTS andlife seems complicated for us sometimes. A combination of our difficulty accepting the truth and the complications of leaving behind a chronically ill teenager for a trip out of state had us wait until it was literally too late. By the time we landed in Colorado, Lou was actively dying.
It had been suggested to us maybe we wait until the funeral. Two trips was not feasible for us. Given the chance again, I still would have chosen to try to make it in time to see him alive. Still, getting on that plane to come home without seeing him was one of the saddest days of my life. I will always regret that we never got to tell him how much his friendship meant to our family. Within a few days we got the message he was gone. Because of the amazing man he was his legacy still lives on in innumerable ways. He will always missed.
About the Author
TJ Madden has been a regular volunteer with The Unchargeables community wearing many different hats. She is a Caregiver for a Chargie with Dysautonomia. You can find her on Instagram sharing her life as a reader, writer, teacher, baker, chicken soup maker, and fighter for all things healthier, stronger, kinder and better than yesterday here.
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.
