In a generation from now I suspect the way people suffer while searching for an ME diagnosis will be seen as a scandal.
Medical professionals will look back on a time when their predecessors didn’t believe patients who reported horrific symptoms, where people living with chronic fatigue and life-altering pain were told it was all in their mind, and where official advice was to exercise more despite that being the very worst way to manage things.
But, for now, we are where we are.
It was 286 days from originally being signed off from work to a doctor telling me I had ME. Looking back, it was nearer two years from the first of my symptoms appearing to the day I was given my label.
Along the way, I had a doctor tell me “you look great so you’re either not as bad as you say or you’ve got a great game face.” That they didn’t realise I was only able to see them because I was having a better day, rather than being stuck at home utterly exhausted with pain throughout my body as well as the emotional toll of all that, is a failing.
Things are improving, and I have seen some truly sympathetic medics during my search for a diagnosis. I have also opened my eyes to the benefits of alternative health solutions.
I must state that I am not making recommendations of any specific treatment. We are all different. Our symptoms are all of different severities. But what I can share with you is the way my outlook has changed.
When I first posted a blog about my undiagnosed symptoms I was inundated with hundreds of messages from people around the world. Many offered simple good wishes. Others suggested illnesses I may have. Some sent me links to articles and experts. It was incredible, though completely overwhelming, and it took me weeks to reply to them all. And I still haven’t read all the things kind strangers sent my way.
But in among them, I began to realise my General Practitioner didn’t and couldn’t know everything. I also started reading more about ME and CFS as it was a recurring suggestion of what was wrong – which turned out to be true. Doing so helped me learn about the widespread ignorance of the illness, how graded exercise therapy was being prescribed despite evidence of its harm, and how it was considered by some to be a psychological rather than physiological condition.
The first off-piste thing I tried was mindfulness. Learning to be more in the moment, focusing on my breathing and my body and my immediate surrounding rather than worrying about stuff that had happened or even more absurdly what was yet to happen, was a revelation. I can tell you the podcasts and apps don’t really work for me. But the times I have tried mindfulness with a practitioner, it has worked. I have really found peace in the moment and it’s helped me slow down.
I was also encouraged to visit a chiropractor. I thought they were people who fixed wonky bones and bad backs. Well, they do, but that’s far from the whole story. My chiropractor understands how the nervous system works its way from my brain stem and through my neck and back. He can spot minute inefficiencies in my posture that may add to my pain. He loosens the taut cartilage which attaches to my rib cage but contracts and stiffens when I have a stress response. My weekly, and occasional twice-weekly, visits have provided me great benefit.
To look after my emotional needs I have found a great psychotherapist. The sessions are about me learning to be kinder to myself. My career was all about burning the candle at both ends, doing more and more and more, and rarely switching off during my free time. Understanding some of the reasons for this repetitive pattern of behaviour, and then shifting my habits to help me slow down, worry less, enjoy the moment more, and realise I don’t need to be racked with guilt for being unwell (which sounds mad when I write it down and read it back!) has been so helpful.
I’ve also been recommended acupuncture, which I’ve yet to try. And, having tried and enjoyed a bit of yoga in the past, it’s something I want to do more of when I can find a class that’s on at the time of day when I have the most energy. Most classes seem to be at lunchtime or in the evening. By then I have usually long since peaked.
The things I used to think of as ‘hippy’ or ‘new age’ or ‘quackery’ are now the things I am finding helpful. I have realised my doctor simply cannot know everything, so taking ownership of my symptoms and finding things that help is empowering and rewarding.
What alternative health treatments have you discovered? Let us know so other Zonked Club readers can benefit.