Medicine is a wonderful profession because it holds you to the mark. You cannot half-ass it. You cannot bluff. You cannot be less than you truly are. You have to give 100% or people suffer.
The emphasis of this text is on recovery from M.E.
Recovery is a dirty word to some. They tell patients that the condition is incurable and even degenerative. And this is odd, for no-one has all the answers about M.E and no-one understands it. If you're going to play-pretend why would you make up something so utterly dispiriting?
When I think about writing something about M.E I pretend that I am a doctor. What can I write? What information can I share that might help others? Yeah, sure, some of it is unpalatable and could do with sugar coating, but then most medicines are unpleasant and most forms of restorative change are unwelcome and wearisome.
I think back to one of the two M.E support groups that I attended during my 35 years with M.E. I think back to the 18-19 year old I saw at the end of one table. What would I tell them about M.E? What could comfort them? What could help to save their life, the life that I myself, largely lost?
It is no accident that when I was a patient advocate I went to meet the founder of Tymes Trust, a charity set up to come to the aid of young people burdened with M.E. I became ill at age 12. I understand what it is like to be struck down by illness and then disbelieved and attacked by physicians. The sheer scale of the life-losses when you get M.E at that age are boggling. Your education, your career, your mental and physical health, your family, all are cast into doubt. What can I write to help the children who suffer M.E? Those seemingly condemned to a life of loss.
And I know just what.
I know what I would say first, from experience, to any M.E patient, but most especially to young people with the condition. And it's not, as yet, much. I am sorry. I will try harder. But it is something. Something very, very important indeed. And it is a fact that is now often hidden by activists. It is hard to know, because so few speak of it.
The symptoms are reversible. When my mind started to fail me, when concentration was almost impossible and thought itself was like wading through molasses, I wish I had known then what I know now: that there was to be an end to it. That I would return to sustained lucidity. That I wasn't sitting there for years, permanently brain-damaged. That would have been good to know.
Likewise the muscular pain and the fatigue so severe it feels more like opposition to movement rather than simple lack of power. To know that I had even a chance to recover function and health and life-experience would have given me greater strength and courage to go on. And there were certainly times when these were needed.
Now. M.E exists under a terrible fug, a medical blind spot, and it is likely grouped with other poorly understood and disrespected conditions. As such, my experience may not be yours, but you know, there is a very real chance that it could be. M.E symptoms vary over time and recovery is simply about boosting the ups and suppressing the downs.
Recovery from M.E is not an instant, all-or-nothing, thing. It is a process. A recovery from M.E is nurtured and grown. And like clearing a mortgage it starts off very slowly. Only at the end do each of the gains become so large as to be undeniable.
I wish for every M.E patient the feeling I had between ages 29 and 30. It was so subtle. It started out as a forbidden thought, a hint, a feeling: The subversive idea that I might have turned the corner, that overall I was not quite as ill as I had been the year before. Of course you do not change the direction of a ship as vast and as laden as M.E in an instant. Even on full reverse these things take time. But slowly, slowly, I came to see that the improvement was real and sustained. There is nothing quite like the feeling of genuine improvement, the realisation of a gradual upward trend.
Now. Maybe my body fixed my M.E and I was just along for the ride, but it doesn't feel like that. It feels like my choices, my response to M.E, mattered. And this is what I will share with you.
TL;DR summary: The symptoms of my M.E were reversible. And that's astounding.
