Being chronically ill is a journey and like any voyage we will all react differently to the experience depending on our personalities and circumstances. I have friends who spend every waking moment online pouring over the latest research and keeping up to date with every ounce of information, and others who barely ever open their laptop. Those who belong to every charity and support group going, and others who don’t want any part of the sick community.
During the first two years of being ill with M.E. I didn’t know much about the disease and quite frankly wasn’t interested. I was going to get better soon and leave it all behind me. I wasn’t so much in denial, as misinformed by a medical profession that told me that most M.E. patients recovered in 2 years and I didn’t see why I should be any different.
Then I became severely affected, was ill-health retired from work, my unused car was towed away and I realized I wasn’t going to miraculously wake one morning cured, so the next 6 years were spent searching for a way to get better. I spent every waking moment in cyberspace, pouring over research. Joined every group I could find, debated obscure theories and tried every wacky pill, food and therapy. Looking back, the arrogance that I would be the one to find a cure when the best doctors and research brains in the world could find no effective treatment for the millions of ME sufferers worldwide, was staggering. I was in complete denial and my life was basically on hold.
After 8 years of living with M.E., and with many of the ‘treatments’ having made me worse not better, I was mentally, physically and emotionally exhausted and finally realized that the definition of “chronic” illness is that it persists. If there were a cure or effective treatment we would all know about it, and it was about time I started trying to live with the disease instead of fighting it. I’d had time to deal with the grief of losing my old life and could finally accept the reality of my new one, while never giving up hope that one day a cure or treatment would be found.
26 years on I hardly ever give M.E. a thought. I subscribe to the ME charity magazine, not particularly to read it because I’ve heard everything in it a hundred times before, but so that my subs help the charity. Other than that I’ve mostly left the M.E. world behind. My illness is fortunately stable, I know how to manage it and if some brilliant effective treatment is found it will be headline news – I won’t have to find it on a Facebook page or some obscure online messaging board. I am successfully living with my disease. I have also, if I’m honest, given up hope of a treatment being found in my lifetime and even if it were I’m fairly sure that after nearly 3 decades of the disease ravaging my body it has done irreparable harm. And I’m OK with that, I truly am.
It’s also now a decade since I was diagnosed with hEDS, and 7 years since I was diagnosed with MCAD. I reacted to both diseases in the same way as I’d reacted to M.E. – initial denial, followed by 2 years of frantic research and information gathering. I was lucky in that I found ways of managing both fairly quickly, and didn’t spend quite so many years as I had with M.E. being angry at my GP and consultants for not being able to ‘fix’ me, and am grateful I’m now fairly stable, though the menopause has buggered my hEDS up royally. I simply get on with life. I’m genuinely not interested in the latest research, information, treatments nor anything else. I’ve been down that rabbit-hole before with M.E. and it’s a massive waste of my time and precious energy. If my hEDS or MCAD weren’t stable it would be a different kettle of fish, and I’m sure I’d be searching for a better way of managing things, but as they are I’m not really interested.
For me, there came a point in my journey with chronic ill-health where I had to start living with my diseases and not existing in a grieving state of limbo. My days fly by. I’m busy with my home, dog, parents, friends and hobbies. I don’t want to dwell on being sick for another minute of any day. Life is short and I have to live it to the best of my ability within the confines of the circumstances in which I’ve found myself. I am totally at peace with my situation. Even as I write that I know there will be people reading it who will think I’ve somehow given up – I would have felt the same way 20 years ago.
M.E. is a very complex disease. It’s not going to be cured by something you eat or don’t eat, by some tablet you can buy at the health shop, or by listening to an NLP CD. Do people who get M.E. now not think we old-timers have tried all that shit already? The same can be said of MCAD. Thankfully I’m managing to control some parts of the disease by massively restricting my diet but it’s not cured. I still wake with hives, I still have horrendous migraines, I am still dermographic, I still risk anaphylaxis with every tablet I take, or every new food I try, but then it’s a chronic disease – for me, one I was born with – so I’m not expecting to be symptom free. I don’t read all the latest research or belong to any groups – I’m too busy doing other stuff and if someone suddenly discovers a cure or hugely effective treatment for Mast Cell Disease I’m sure I’ll get to hear about it.
What I’ve learned from living with chronic disease for nearly 3 decades is that the best you can hope for is to manage your symptoms well and to be at peace with your situation. If you can find a way of doing that, which will be unique and different for all of us, you can have a life despite your situation. It might not be the life you wanted but then very few healthy people ever get to live the life they truly want. Life is, for the most part, a compromise for all of us.
Realistically, I also know that if I were completely cured of all my diseases tomorrow I would just be presented with a whole new set of challenges. I’d have to find a full-time job at the age of 52 with no up-to-date skills or experience. I still wouldn’t have a partner, and my parents would both still be old and sick. I wouldn’t suddenly have a whole new set of friends to do stuff with, so would still be flying solo. I would have to grieve and be angry all over again for everything that three decades of ill health had taken from me. Post-ill-health life wouldn’t be some nirvana where my garden was wonderfully rosy.
We can’t judge each other for being at different stages of our illness experience. I forget what the early years of being sick were like, and the newly diagnosed can’t hope to understand my life as an old timer. Our coping strategies will also be vastly different. Our homes lives and the amount of support we have, or don’t have, varies wildly. Our economic status has a huge impact on our wellbeing, as do factors like whether we have children or are happily married. A million and one variables will drive how we cope with our situation. None are right, or wrong, just different.