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8 Honest Things I Wish Doctors Had Told Me About Life With Chronic Illness

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Being chronically ill is a journey, as clichéd as that term is. It’s a journey of symptoms, tests, diagnoses and medications. It’s also a journey of learning about yourself and how to deal with those conditions, as well as how others will react to the changes in your life.

When I was first diagnosed with a chronic condition, I was about 8 years old. My fingers, and then my toes, were going very cold and white or blue in the winter or if I touched something cold — an iced drink, getting something from the fridge, throwing a snowball in the winter, that kind of thing. I was diagnosed with Raynaud’s syndrome. At that age, I didn’t really know what a chronic illness was. I don’t recall that term being used — just being told I had a condition and I would have it for the rest of my life. I wasn’t put on any medication, just advised to wear gloves and avoid the cold where possible. It didn’t really seem that big of a deal at the time.

Several decades on, and the diagnoses of chronic conditions — postural orthostatic tachycardia syndrome (POTS), hypermobility Ehlers-Danlos syndrome (EDS), chronic migraine, fibromyalgia, Mast Cell Activation syndrome (MCAS) and interstitial cystitis, among others — came thick and fast. Given the amount of time I spent, and continue to spend, at medical appointments, it was impossible not to realize they were a big deal and were going to affect my life. However, while (most of) my doctors are incredibly helpful in terms of tests, medication and recommending supplements, I do think what was missing from my medical care was an honest conversation about how chronic conditions will affect you on a day-to-day basis and the chronic nature of their symptoms. Personally, I would have liked to have had an open conversation about the impact of my conditions on my daily life. I had bits and pieces of advice, often from physiotherapists, but not a proper chat about what “chronic” truly means. It would have been hard to hear, but I think a frank discussion would have been helpful for accepting my conditions and making choices about lifestyle, diet and exercise, amongst other issues. These are the main things I wish I had known when I was diagnosed with chronic conditions, and I hope you find them helpful.

1. A chronic condition is unlikely to go away.

Being told a medical condition you experience is chronic is hard to hear, and often difficult to accept. It is a big adjustment to know you are going to have to navigate a medical condition for years, decades or perhaps the rest of your life. Acceptance of this change to your life may involve a great deal of time and support from family and friends. It may be worth exploring different options in terms of therapy or other professional advice if you feel overwhelmed by a new diagnosis.

When I was told I had migraine, I initially had a naive idea that there would be a medication that completely took away the symptoms of head pain and dizziness. My doctor did a good job of explaining my diagnosis, symptoms and possible treatments, but it wasn’t explained to me that this was likely to be a lifelong condition and one that would take a great deal of time and effort to effectively manage. I wish I’d had a kind and thoughtful person let me know this was likely to be the case — that the reality was that my doctors weren’t looking at how to “cure” my conditions, but how best to manage their symptoms. It would, for me at least, have been easier to accept my conditions if this had been communicated effectively to me and stopped me from clinging to false hope for a long time.

2. Lifestyle changes and supplements can be very beneficial.

Although most chronic conditions will remain with you for the longer-term, some conditions may respond well to lifestyle changes and supplements. In my opinion, sometimes doctors can focus a little too heavily on medications and may not provide detailed advice on alternative treatments to work alongside or instead of medications, but it is always worth asking! I found the input of an occupational therapist, dietician and physiotherapist to be very beneficial. Each of us is different and will respond differently to medications, supplements and other lifestyle changes.

3. You will have flare-ups.

Many chronic conditions aren’t “static” in their symptoms. With fibromyalgia, migraines, POTS, etc, many people experience ups and downs in their pain and fatigue. There will be times when your symptoms are more manageable and don’t impact as much on your day-to-day activities, but there will also be times when you have a flare-up. During those times, the symptoms will increase and become more difficult. They may affect the activities you can do, and it can become more challenging to carry out certain tasks.

It is at these times it is advisable to go easy on yourself both physically and mentally. I am definitely guilty of thinking my symptoms are going to stay more difficult forever. I can’t think about a “flare,” a temporary situation where my symptoms will increase in severity. Instead, my mind goes into “this is what life is going to be forever and I will never be able to do x, y or z again.”

Recently I had a flare of extreme tiredness. It lasted about six weeks, and is now, hopefully, starting to subside. I was a bit easier on myself in terms of physical “things” such as walking, resistance workouts and generally being out and about. I think that, and improving my sleep hygiene, was helpful. Speaking to an occupational therapist about pacing techniques may be very beneficial for learning about time and activity management.

4. “Fighting” illness may not be helpful.

There is a lot of talk about “fighting” chronic illness. Well-meaning friends, family members and doctors have advised me to “keep fighting” or “not let my body win.” Perhaps this language and idea of fighting is helpful to some, but to me, it feels very negative. I’m not going to “fight” my body because I have chronic conditions — which means they will be with me for the rest of my life, and so I cannot win the battle. Instead, I have found it is more helpful to think about navigating illness, and working out how best to manage my symptoms. Being kind to your body (and yourself) and approaching health in terms of diet, lifestyle and stress management, alongside medication if required, seems far more helpful and productive than trying to beat it into submission. So I’m not fighting my body; I’m going to work with it as best I can to feel as healthy as I can.

5. You will find out who your friends are.

Navigating chronic illness and friendships can be challenging at times. Over the years, I have had amazing support from certain friends. Perhaps it has even made our friendship stronger that I have confided in them about my conditions and symptoms. It has given more depth to friendships, and I have noticed my true friends confide in me more about other difficulties they are experiencing in their lives.

On the other hand, it is the case that I have lost friends or chosen to distance myself from them. A very close friend, in particular, became fairly hostile once I became unwell and we no longer speak or see each other. Another friend remains a friend, but I have to be a bit careful about what I say to her. At times there is a strange competitiveness which I now try to avoid. Think of me saying I have been laid up with a migraine for a few days and her saying she has a headache as though it is a comparable situation.

So, as difficult as it is to contemplate, it is likely to be beneficial to prepare yourself for the fact that friendships and relationships will change, both with family members and friends, and maybe colleagues as well, if you work. Hopefully, that change will be a positive one that strengthens bonds and closeness but also be aware you may have to come to terms with more negative outcomes. Maybe think about reaching out to the chronic illness community on social media? I have found Instagram to be a lovely place to find friends with the same or similar conditions to myself, and I am so thankful I overcame my fears and set up an account that focuses on chronic illness. The support I have found there has been incredible, and I feel part of an amazing community of like-minded people.

6. You will have to make choices (about how to spend your time)

If pain or fatigue is an issue, as they are for many chronic conditions, then you will have to make choices about to spend your time and energy. Pacing and activity management can be really beneficial for making those decisions, and it’s a strategy that many doctors have suggested I try to help with chronic fatigue. I am not the best at it, I’ll admit, but I’m definitely improving! For a long time, I found pacing really difficult because it felt constraining — I was simply cross that I couldn’t just do whatever activity I wanted to. However, I’ve realized that pacing can be really positive if you re-frame it in terms of making a choice to focus on doing the things that are really positive, and that you want to do, rather than wasting time on those you don’t.

Unfortunately, I still have to do the housework and other boring tasks, but I can make choices about how to best spend my free time. So, seeing a “friend” who isn’t supportive is a waste of my energy, but having a coffee in the park with someone who lifts me up and makes me feel positive is how I want to spend my time. Making choices means you can prioritize the positive!

7. You will have to become your own medical secretary.

I swear that people with chronic illnesses deserve some sort of qualification in medical secretarial skills! It is, unfortunately, the case that with a chronic illness comes a lot of medical admin. This may include booking appointments, chasing test results or referrals, organizing prescriptions, etc. It can be time-consuming, frustrating and very boring! My advice would be to be super organized. Get a medical folder (or several folders) and file everything. Use dividers to split up the clinic letters you receive according to doctor or condition, and space for appointment letters, headache diaries, etc. Keep a list of outstanding tests for which you are waiting on an appointment, or referrals you are going to receive. I have had numerous appointment letters get “lost in the post.”

8. You will be given a lot of advice.

Something that makes me laugh to an extent is the amount of unsolicited advice you receive from others once they find out that you are unwell. These people, for the most part, don’t have any medical issues themselves but feel they are able to suggest products, supplements or lifestyle changes that will help. Often, it is a case of “my mum’s friend’s daughter had what you have, but she was cured when she gave up yoga and ate kale every day.” I’m not bashing people here for trying to help, and most people are trying to help, but it can feel oppressive in a way. I have heard enough times that coconut water, not eating peppers and meditation three times a day will transform my life!

A version of this article was previously published on the author’s blog.

Photo by Jonathan Zerger on Unsplash

Originally published: June 6, 2019
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