It’ so hard to explain when you’ve not experienced it yourself, the debilitating fatigue that I often feel.
It’s not the same as being tired after working a long day. Even though that’s probably the only thing you can compare it to. And I’m happy for you, that you can not relate. But it is important for me that you try to understand what I’m going through.
Party time!
When I wake up, I am exhausted. As if I haven’t slept at all. You can compare it to going out partying all night, not sleeping and going to work right after. You feel like you can crash any moment due to lack of sleep, and maybe a hangover.
Well I feel like that, but without the partying and without the alcohol. I do sometimes have the hangover feeling though, as a bonus.
All day long I feel like I need a nap, the exhaustion is making me nauseous. I used to think it’s normal to feel nauseous when you’re tired. Recently I found out that’s not the case.
Got the flu
Imagine how you feel when you are sick. You have the flu or some other type of virus. You can’t think straight, forget everything, and just want to lay down. Not necessarily to sleep, just lay down cause you are so tired. Because your body needs it to fight of this virus.
You have no apetite, or a simply too tired to eat. Now you even have less energy, cause you have not eaten in days.
That’s me all day every day. My body is fighting itself, cause I have several autoimmune diseases. Naps are a part of daily life for me. There are many days that I’m too tired to eat, or too nauseaus to eat. Or too tired to prepare a meal. Bags of chips are my best friend. Not the healthiest but it helps.
Put yourself in my shoes
I know it’s a long shot, but hopefully these comparisons help you understand what it is to live in my body.
Please be patient with your chronically ill friends and family. They feel like they have the flu while hungover from an all nighter, all the time.
Extreme fatigue is no joke. It’s much more than just being tired. It’s the bone tired, I can’t take it anymore kinf of fatigue. These 11 memes may help you explain it to other people.
This meme explaines exaclty how I feel every single day. The little monster is called Snore, he is one of the Chargimals. Snore represents extreme fatigue. Find out more about the Chargimals here
Share this with your friends and family, because it is definitely not for the weakand then some…some days I’ve only got 1% energy to get through the dayWhich mood are you in today?
A normal healthy amount of sleep is 8 hours they say. That’s not nearly enough for me. I really need 9 hours and sometimes even that is not enough.
But then when I take a nap and wake up 12 hours later I wonder, is it a good thing or a bad thing?
To be honest, I don’t get out of bed every single day…
Yoga can act as a multi-purpose remedy for people of all age groups. It has therapeutic properties within each yogic movement that are good for the mind, body, and soul.
During your moments of wanderlust and planning your travel, when you have decided your favorite destination to go to, you don’t want any moments of severe symptoms or anxiety to impact your holiday once you’re on your way. It’s good to think positively about your future journey, but it’s wise to also take the necessary precautions. If you have impaired mobility, neurological dysfunction, fatigue, pain, etc., you may end up experiencing anxiety, less social interaction or even depression. In an effort to minimize such experiences, you can calm your symptoms or yourself with Yoga.
Meditation, Pranayama, or Yoga are exercises that can be performed anywhere. Therefore, while traveling, yoga can help relieve the symptoms of chronic illnesses. It works as a stress-buster as you increase qualities such as compassion, focus, improved memory, and better concentration. It may seem like too much of a challenge to maintain a yoga routine while traveling. What if you have to face uninvited challenges? However, it’s worth it. Yoga works as a booster to elevate your moods. Researchers have found and proven that Meditators are more self-aware and come through the stress-related problems to live a quality life.
The Benefits Of Practicing Yoga Whilst Travelling
Yoga is extremely beneficial, especially while traveling. Why? Because it promotes better health, allowing you to make the most of your holiday. Yoga, Meditation, Pranayama, and similar yogic practices can also help with clearing brainfog, which many people with chronic illness experience. Meditation also helps in clearing out the clutter that is causing emotional instability. It gives a clear perspective and a focused mindset while the Pranayama also helps in flushing out the toxins to reward you with a refreshed state of mind.
While traveling it is important to maintain healthy habits and to be aware of your surroundings. Create a safe space for yourself! It is important to look after yourself when you are trying to balance work and family life. People often ignore the more subtle elements of their health because they are too focused on dealing with the lives of other people. Yoga makes sure that you take care of your mental and physical health, because only then can you take care of others.
Establish your own yoga routine so you can take it with you anywhere
To start your yoga journey as someone who experiences chronic illness, consider private instructors initially; join gentle and restorative classes; practice Yoga from online sources or digital media. A little bit of stretching and deep breathing can be a benefit to almost anyone. So, travelers must consider this wonderful hack to give priority to their health while still making the most of their adventures. Let Yoga be your travel partner, a guide that can help protect you from all the bad forces of life with the natural power it inherits.
Look at the positive side of the world and appreciate every with grace. Staying positive is a weapon that not many people can fully embrace, but many people chase this state of mind as an infinite goal. So, if practicing yoga interests you, grasp motivation and start your journey. After all, being alive is a gift in itself to cherish!
Bipin Baloni is a passionate Yogi, Yoga Teacher and a Traveller in India. He organizes 200 hours of yoga teacher training in various cities in India and Nepal. He also conducts AyurvedaCourses in Kerala He loves writing and reading books related to yoga, health, nature, Himalayas and Trekking in Nepal .
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.
As a young adult with chronic illness, I have received a lot of snide comments from people about their perception of my lack of independence. I also find that I receive snide looks when I let it slip that I require help with things that other people may not.
These snide comments or looks can come from anyone; whether it be family, people close to me, medical professionals, or even complete strangers. Independence can be difficult to retain and maintain when you have a chronic illness, and it doesn’t help when people point out that they think it’s lacking, especially if your independence is one of your insecurities
Unsolicited Outside Opinions.
I recently saw a post online saying that the only way to help someone with chronic pain is to NOT help them at all. Apparently, if you do things for someone with chronic pain, they aren’t going to want to learn to do those things for themselves.
As someone with Fibromyalgia, I find this assessment extremely flawed. Sure, it may be accurate for those recovering from an injury or surgery, however, it is certainly not accurate for those with chronic illness. For many people with chronic illness, there is no recovery.
Sure, symptoms may become better managed, however, they may never go away. So, refusing to offer someone help when they do need it just because they may not need it in the future seems pretty illogical to me.
This isn’t the first time I have encountered people with this kind of thinking in my chronic illness journey. When I was about 13, my mother was told by an intern psychologist that the reason I didn’t do things around the house that ‘normal’ kids would do, such as packing their own lunch every single night or fetching dinner from the kitchen, was because I simply didn’t want to.
My mother was told that I didn’t struggle to move, I just had behavioural issues and lack of motivation. This obviously wasn’t true. My parents didn’t listen to this person, however, because they saw the slow progression of my condition. They saw the nights I laid curled up in a ball, whimpering or crying in pain, unable to move.
They saw how I became more and more dependent on my crutches (I’ve now switched to a walking cane) because I was in too much pain to bear my own body weight. I’m so glad my parents did what they knew to be right for me, as it was only with their help that I was able to make it through high school without becoming more overcome with fatigue than I already was.
Moving Out of Home.
Moving out of my parent’s home was a massive step for me when it came to gaining more independence. It felt good because I was doing something completely for myself. I searched for flats, I wrote up budgets and did everything else that came with planning to move.
It all seemed to be coming together perfectly. It was during the first few weeks of moving that I received my first reality check. Moving my stuff from my parent’s place was both time consuming and extremely exhausting. I needed a lot of help and my pain levels skyrocketed, both from the physical task of moving as well as the stress.
Once I was finally settled, I realised I was drowning in all the housework. I was pushing myself to my limit and not really getting anywhere. It wasn’t long before I realised that no matter how hard I tried or wished it was so, moving out of home didn’t make me require help any less.
It really struck me one night when I was lying in bed, having a pain flare, wishing I had the energy to get up and get my medication. I was far too sore to move, and I didn’t have anyone to ask to for help like I would have at home. I felt extremely lonely, and I cried myself to sleep that night.
Relying on My Mother for Care.
Despite the fact that my mobility is hindered due to my chronic pain, I do not fit the criteria for a caregiver. I was refused carer hours when I applied for it after my 18th birthday, and again after I moved out, despite the fact I had received carer hours prior to my 18th birthday.
They apparently don’t provide help to people over 18 who don’t have a diagnosis that is on their checklist, no matter what the person’s physical ability is. At one stage I was even told: “well if you were diagnosed with [insert diagnosis with similar symptoms to mine] we’d be able to help you.”
As a result of this, despite me not living at home, my mother drives me around, does my washing, and helps me tidy my room. I feel bad for needing her help because she has two boys to look after, both of which have autism as well as one of them having a Chromosome Deletion.
However, I have no choice. I am in a place where I simply can’t do these things for myself. Believe me, I’ve tried. Just this morning I started tidying my room before my mother arrived to help hang up clothes, and by the time I was finished, I was shaking with exhaustion.
I could barely hold myself up in a sitting position, despite the fact that all I had been doing very little activity. My mother is honestly my hero. I wouldn’t be able to function without her.
Not long after my application for carer hours was denied after moving out, I was talking to someone about how I had been refused help and how I was frustrated. When I tried to explain my situation, they replied: “well, maybe it’s because they want you to be independent.” I was shocked.
This implied that I was choosing to be dependent and that I could just switch my dependence off. I was torn between wanting to laugh and wanting to cry.
I would be fully independent if I could.
People with chronic illness don’t ask for help ‘just because’. They ask because they need it. This idea that the chronically ill should be left to do everything for themselves is extremely harmful.
Sure, there are the people who have chronic illnesses who are fully independent, and I respect them for it. However, not everyone can manage that. One thing that I don’t think people that haven’t experienced chronic illness (first or even second hand) understand is that if I could do these things for myself, I would.
I’d have my driver’s license, I’d be living in a student apartment on my own all the way across the city, and I’d be studying full-time, doing the course I dreamed about throughout high school that I had to give up due to my health.
The one message I want to convey in this article is that my dependence is not a choice. It’s me doing the most that I can.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
I guess you could say that I have the interests of an average 19-year-old girl. I like to read, watch makeup tutorials, and binge watch series on Netflix. I also enjoy hanging out with friends and socialising, when I have the energy to. Having struggled with the chronic pain of Fibromyalgia since childhood has shaped my adolescence in many ways.
An Average Girl
There are so many things that I wanted to do but couldn’t. I wanted to play sports throughout high school, I wanted to go overseas for a gap year after graduating, and I wanted to study Speech-Language Therapy at university once I got back. As a result of my chronic pain, none of these things was meant to be.
While this upsets me, I do everything that I can to ensure that my chronic pain limits my day-to-day life as little as possible, especially my social life. Besides just hanging out, something I love doing with my friends is going out dancing. As you can imagine, dancing (or more like swaying side to side, in my case), is exhausting.
Going out for a single night of dancing can leave me flaring for up to a week afterwards. Another thing I like to do, that I don’t do nearly as often as dancing, is going to the theme park. This can easily become a full day affair. The constant walking along with the jarring of the rides can leave my entire body aching for days.
Some people may scoff at my enjoyment of these activities. After all, why would I do something that causes me pain? The answer is this: everything I do causes me pain. I’m in pain every second of the day. I’m in pain while I walk, I’m in pain while I sit, and I’m in pain while I rest.
When pain and/or fatigue rules your life so thoroughly, it can become a goal to not let it stop you from having fun. It’s almost as if I have something to prove to myself; that I won’t let the pain take my ability to have fun away. And luckily, it hasn’t. However, having fun with chronic illness can often cause side effects.
The Pain In The Moment
For me, the pain that I experience in the moment of doing an activity can definitely put a damper on any fun I may be having. As the day develops, my pain slowly gets worse. Having pain in one area is bad enough, however having pain that is spread throughout your entire body can be so incredibly overwhelming. The pain can sometimes result in me unconsciously becoming very grumpy, which can ruin the rest of the day.
Not only does pain impact any activities I take part in, but it also prevents me from doing specific activities that I would otherwise want to do. Despite me enjoying being active (it’s the resulting pain that I don’t enjoy), I can’t take part in activities such as hiking and kayaking because they raise my pain to unbearable levels.
Of course I often I push myself to do activities that I know will result in heaps of pain, however, it becomes a fine balance between being able to barely cope with the pain, and curling up in a ball, moaning as pain consumes me. I like to avoid the latter option.
Brain Fog
Another symptom that can ruin my fun is brain fog. For me, brain fog is very distracting, especially if I’m out trying to have fun. I feel like no matter how hard I try to concentrate; I can’t think or talk straight. Most of the time I have brain fog I feel like I can barely string a sentence together, that I’m talking nonsense.
When the brain fog is at its worst, I feel like my mind and mouth are numb. I can’t bring myself to speak, no matter how much I want to. I also can’t process what people are saying to me easily. Since this level of brain fog only occurs when I’m in very extreme levels of pain, I normally have warning signs leading up to this and can get myself home before I lose the ability to communicate.
The Recovery Time
Depending on how much energy I expend on an activity, my recovery can take anywhere from 3 days to an entire week. If I continually exhaust myself day after day without resting for a few or more days, I can be left feeling ill for weeks. I have learned this the hard way.
Every person with chronic illness has different symptoms that they experience during their ‘recovery period’. These symptoms can include muscle cramps, fever, flu-like symptoms, migraines, and of course likely the most common one, fatigue.
Recovery for me usually consists of lying in bed, too tired and too sore to get up for anything that isn’t imperative. I get an ache that is somehow both dull and sharp throughout my entire body and having such widespread pain only adds to my exhaustion.
So far, besides medication and rest, I haven’t found anything that helps with this kind of pain once it’s occurring. As a result of this, whenever I am planning something that I know will leave me flaring, I try to make sure that I don’t have any responsibilities (such as exams) or events for at least three days after the activity. That way, I can recover without missing out on something important or having to push myself.
The Guilt
I worry that whenever I’m seen out having fun, or whenever I post a picture of myself having fun on Instagram or Facebook, that people may see this as evidence that I’m not sick or that I’m making my symptoms up. In some countries, the social media accounts of chronically ill people are being used to determine whether or not they are “sick enough” to receive disability cheques from the government.
I find this ridiculous as I’m more likely to post a photo of myself on the rare occasions that I’m dressed up to go out, then I am to post one when I’m at home, barely able to move because of pain. Going out and having fun when you have a chronic illness a bit of a catch-22.
If chronically ill people don’t do enough, then they’re called lazy. If they do too much, then they aren’t sick anymore. Having a chronic illness and going about life is hard enough without having to face the judgement of others.
How To Have Fun With Fewer Side Effects
When I want to spend time with my friends but I’m flaring badly, I invite a friend or two over for a sleepover or a movie and some drinks (the legal drinking age is 18 here). It may seem kind of juvenile, but I will never get too old for sleepovers. This way, I can sit on the couch or lie in bed while catching up with besties. This is also a great time to catch up on Netflix movies.
If there’s no way to avoid a lot of physical activity that day, I make sure to keep my medication on me in case my pain levels become high. Keeping your medication on you guarantees that if you need it for whatever reason, you have some on you.
Another tip for high activity days is if you are easily exhausted, don’t be too self-conscious to use a walking or mobility aid. My walking aid of choice is a walking cane, since it’s less harsh on my shoulders and back then crutches. Since the common stigma for walking canes is that they are exclusively for use of the elderly, I used to push myself too far because I was worried I would be judged for using a walking cane.
If the place we’re attending has a wheelchair that can be loaned out, such as a mall or a zoo, I will borrow the wheelchair if I know that I’m going to have a rough pain day. I don’t have a wheelchair (for ambulatory use) of my own yet, however, it is definitely a goal of mine.
If you’re heat/sun sensitive, try to choose activities where you can spend a lot of time in the shade. If sun hats and sunglasses help, make sure to keep some on you. Also, no matter what your symptoms are, keeping hydrated is important for your general daily well being. Make sure that you keep a bottle of water on you if you’re going to be out of the house for more than an hour at a time.
Having fun when you have a chronic illness can be very difficult, however, it is so important. It is easy to think that chronic illness takes the fun out of life, however, that isn’t the case. While I’m in pain every second of every day, I still aim to make the best of the life I’ve been given.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.
1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”
Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.
2. “Oh, I’m tired too, I know exactly how you feel.”
Ah, Chronic
Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have
no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that
you could sleep for 16 hours and still wake up exhausted. You have to rest
after having a shower or bath because you’re shaking so badly from the
exertion. Chronic Fatigue is like swimming in concrete, every movement takes
enormous amounts of energy and the simplest tasks like brushing your hair or
washing your hands take effort and concentration.
Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!
3. “Have you tried (fill in the blank)?”
I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.
When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.
4. “Well, you don’t look that sick.”
This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.
5. “When are you going to get better? You’re always in poor health.”
Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.
When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.
I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.
Since I first started complaining of experiencing Fibromyalgia symptoms such as chronic pain at the age of 7, attending school has progressively become more and more difficult. Now, 12 years later, I experience constant widespread pain and fatigue. Despite the constant pain that is undoubtedly made worse by me attending university, I still love studying.
I’m the kind of person that enjoyed attending school as a child, and since I’ve been signed off work by my doctor, I feel like I’d be incomplete without study. Distance study could be an option for me since I become exhausted easily, however, I find that I don’t have the same motivation to complete work that I have when I attend classes at a campus.
I find that I have the mindset of if I travel into university, I may as well make the trip worth it by getting as much work done as possible. Plus, despite how boring they can be, I love the vibes of lectures and tutorials.
Please keep in mind that since I live and attend a university in New Zealand, some of these tips and tricks may not be applicable internationally. However, I hope that some of these tips and tricks are helpful to any students with chronic illness who may be reading this article.
Don’t Discount The Option Of Part-time Study
When I was first applying for university, I didn’t want to think about part-time study. I thought that because I (barely) managed full-time study through high school, I should be able to manage full time at university too. Basically, I was in denial. I thought that studying part-time would mean that I wasn’t coping as well as I should be and that I would be less of a student.
Luckily, I was turned down for the full-time program I had applied for, so instead, I had to do a part-time, four days a week program for a year to see if I would cope with the difficulty of the classes. While I did pass my classes during that year, the four-days-a-week schedule was very stressful and caused my health to go downhill.
Due to this, I had to dismiss the full-time program as an option for the next year, despite it being the only program that would give me the qualifications I need for my dream career. When I first had to come to terms with this it was a little heartbreaking. It felt like my dreams and aspirations were crumbling down around me. I now am studying part-time, three days a week in a completely different field. And while this is still difficult for me, I am far more comfortable attending university than I was before.
Contact Disability Services At Your Institution Of Study
When I first started applying to universities during my final year of high school, one of the first things I did was check out their Disability Services and the application process. I had been under the high school equivalent, which, I was told, considerably increased my chances of being accepted by the service. Being under similar services at high school gave me insight as to what to expect and what assistance I may be able to ask for.
The application process was pretty simple. I was given a form to fill out, which required not only a doctor’s input as to what assistance I required but also allowed me to write a paragraph myself about my chronic pain and how it affects my studies. I also attached some notes from my Chronic Pain Clinic Physiotherapist, who I had been seeing for the past two years at that stage, to add further context to my application.
Disability Services has helped me with many things. They have made sure I have a supportive chair in the classes that allow it, and exam considerations such as rest breaks (due to my back pain) and extra time (due to me having Complex Regional Pain Syndrome in the wrist I write with, and brain fog causing concentration issues). I definitely recommend checking to see if this is an option available to you at the institution you attend.
Don’t Be Too Self-conscious To Use A Walking Aid If You Need One
I have been using a walking cane since I was 16. Before that, I had been using crutches constantly to help cope with my hip, knee, ankle, and back pain. I switched to a walking cane because crutches became too harsh on my back and shoulders, causing too much pain to make using crutches worth it.
Being a young person who uses a walking cane, there are times when I can become very self-conscious, especially around other people my age. As you can imagine, this left me very anxious about the prospect of using my walking cane at university. However, I realised that I do need the walking cane to get through the day without collapsing from pain and exhaustion, so I decided that what other people thought of me didn’t matter.
Since my pain levels fluctuate, I love using a walking cane that folds up. This means that I can pack it away in my bag when my pain levels are lower, and then bring it back out when my pain levels are high.
Set Daily Or Weekly Study Goals Instead Of Schedules
Many students like to create an hour-by-hour schedule for completing their assessments and studying content from their lectures. However, when you’re in constant, fluctuating pain, this may not be manageable for you. For me personally, setting a schedule would be like setting myself up to fail, because my pain levels are never at a constant level (unless I’m having a really bad day and the pain is constantly high).
So, say I schedule an hour of study for 4:00pm. I may be feeling ok that morning, but by 4:00 I may be so tired and sore that I can’t concentrate. Instead, I like to set goals such as reading a chapter of a textbook a day leading up to an exam or aiming to complete a certain amount of an assignment within a certain amount of time.
During a particularly bad flare, I may not be able to achieve these goals, but when I’m not in extreme amounts of pain, these goals make studying while in pain achievable.
Keep Your Medication On You
I’m often guilty of forgetting to do this. While I take two large sets of pills first thing in the morning as well as at night, I also take pain medication during the day if required. I find it is far better to have my medication with me and not need it than it is to need my medication and not have any on me.
Since I travel two and a half hours each way to get to my university, the chances are high that I’ll need medication at some stage during the day. Being in too much pain can seriously affect my ability to pay attention in class and take notes, which in turn can put my grades at risk.
For this reason, it is imperative that I don’t forget to pack a sleeve of pain pills in my bag. I also love taking a small tube of Voltaren Emulgel with me to university. It is great for massaging acute aches and pains and works especially well on the swelling I get in my wrist.
Explore Your Campus And Find A Place You Can Rest In Between Classes
If you don’t live on campus and suffer from fatigue, this tip can be incredibly useful. My favourite space to rest at university is a room in the library that has couches and large bean bags. If a bean bag is available, I can put all my stuff down, lay back, and relax. This space also allows eating and drinking, so I can eat lunch and chill in this space.
Stay Hydrated
This tip may seem extremely obvious to people, however, I am often guilty of not drinking enough. I personally like to pack a water bottle that is at least one litre in my bag. While staying hydrated isn’t going to cure your symptoms, it does help with your overall feeling of wellness.
Use An Online Editor For Your Essays
This is honestly a life-saver when it comes to handing in essays. Often when a deadline is looming and I’m finishing off my assignment, my stress levels rise, and as a result, my pain and fatigue levels also do too. This can lead to me experiencing brain-fog as I write, which can result in anything from grammar mistakes to me writing utter nonsense without realising it.
Using a free online editor program such as Grammarly, I can detect any grammar, spelling, or punctuation errors and correct them.
Pace Yourself
It’s very easy to think you can push through your pain, but then you may end up pushing yourself too hard. It can be so incredibly tempting to “boom and bust”, this, however, can cause more harm than good, especially to your health. For the good of your health and grades, try not to take on too much work at once.
While attending University is definitely a struggle, I absolutely think it’s worth it. It gives me a sense of purpose that I may not have otherwise, and a chance to socialise and expand my knowledge. I hope these tips are useful to any students with chronic illness, and I wish you all the best with your studies.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
At the age of 14, I fell off a stack of gym mats at school and I hurt my knee. At first, the doctor thought it was just a sprain, but as the months went on my injury did not seem to get any better. This is where my journey of having a chronic illness all started.
For twelve long years, I was as healthy as I could be on paper…but every day was a struggle. I was in a lot of pain and nobody seemed to know where it was coming from. I was feeling so tired I sometimes would fall asleep while talking. At least once a month I had to call in sick at work and one by one I started to lose friends. Some of them even labeled me a hypochondriac. Nobody seemed to understand the struggle I was going through.
I was sent to a physiotherapist and he was able to provide me with some exercises, next to weekly electrotherapy sessions, which made my knee injury a little better.
Allergic to a flu?
At the end of the summer of 2009, I went to visit a friend for the weekend, on the way home I started to feel sick. My head was hurting and the “brain fog” I always felt was so bad I couldn’t remember how to open my front door.
My fingers started to swell up and breathing became difficult. I had caught the Mexican flu somewhere along the way and it came in hard. My body overreacted to this type of flu and as an allergic reaction I suddenly had developed acute Rheumatism. Every connected tissue (including all my joints) was inflamed and I was bedridden for nine weeks, mostly thinking this would kill me, it hurt that bad.
Not being able to move, meant not being able to go to the doctor!
Living in an Amsterdam apartment on the fourth floor meant I could not go to the doctor so he came to me. After several blood tests, he diagnosed me, there was nothing else to do but to take painkillers, anti-inflammatory and wait till it got any better.
Going to the bathroom from my bed was only a three metre distance, which took me half an hour as I had to crawl there. I was in agony and at one point breathing became so difficult, I thought I was going to die. Luckily my sister and her husband were living around the corner and were able to help me with things. My sister made sure I had food in the house and kept me company several hours a day, her husband helped me (when he wasn’t at work) by carrying me to the bathroom so I wouldn’t have to crawl there and back.
Recovery was what got me diagnosed.
Recovery was tough, but my physiotherapist (the same one I had, every month ever since my accident at the age of 14) was the one that told me he thought he knew what I was dealing with. Fibromyalgia! Before he mentioned this I had never heard of Fibromyalgia and immediately I read up on everything there was to read about this illness.
A few years along the line
About three years ago I found out by chance I also have a severe gluten intolerance, which made me sicker, on top of my Fibromyalgia. I now eat gluten free which helps me keep my health up as much as possible. I exercise daily and have a strict sleeping routine, of going to bed and waking up on set times.
Now, about ten years after my diagnosis, I have learned that I will never know what tomorrow will bring to my body and health. Mentally it has put me through highs and lows and I have learned how to enjoy my life instead of feeling depressed about having a chronic illness.
I went from somebody who doctors thought would end up in a wheelchair before 35, to a woman capable of living life to the fullest, and by adjusting to my illness and accepting my illness, I sometimes even forget I have Fibromyalgia.
About The Author
Born and raised in Amsterdam. Sarah always knew she needed to travel the world. She began travelling at the age of 19 and has traveled to and lived in over 25 countries.
Being confronted with a chronic illness at a young age, which has never stopped her dreaming of the next place to travel too.
Together with her 3 dogs Sarah now lives on the Canary Islands where she teaches English, works as a self-employed translator and copywriter and occasionally provides dog training lessons.
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.
