An article was written in the Telegraph this week about an M.E. sufferer who has recovered enough to go on short holidays, including visiting friends, after being housebound for 14 years. Like me they became ill in the mid 1990s after vaccinations for travel abroad and, like me, they are still ill over two decades later. Also like me, they were severely affected for ten years before making a degree of improvement (though, like me, they still have ME).
The post was shared on social media and immediately negative comments appeared from other ME sufferers. They found the article upsetting. They questioned this person’s diagnosis and how they had managed to maintain friendships if they were bedridden/housebound. The snippy comment that “well, lucky them to have got to travel before they got sick”, even though this poor person became ill at the age of 21 and is now 45!
The comments stunk of the green eyed monster which I understand, I really do. When I was severely affected and would read about ME sufferers who were less ill than me and still able to enjoy at least a semblance of a normal life it used bring me to tears. Why the hell should they get to go on holiday or out for lunch or to the cinema when I couldn’t even sit upright without passing out? Why had the people in their life stuck by them when the people in mine had left in droves? They were even getting married despite being bedridden – where on earth were they meeting these men when the only person I ever saw were the post man and my cleaner and the men I came across online lived hundreds of miles away if not on another continent? It was so UNFAIR goddammit! But I never resented them. Never questioned their diagnosis or their suffering.
Now the shoe is on the other foot and I am the one enjoying some semblance of a normal life. But I worked really hard to get where I am today – I don’t think anyone appreciates quite how hard, or how stressful, soul destroying, exhausting, depressing and lonely the road has been. I have no clue why I’ve managed to make some degree of improvement while other people who became ill at the same time as me, or who are as severe as I was, have not. I know I’m lucky but I’m also aware that some sufferers resent my improvement.
My improvement was gradual – it took years, it didn’t happen overnight – but when I had finally recovered enough to start driving again (automatic car), or to own a dog (walked by other people who I have to pay), or to start cooking meals again (albeit not every day) questions started to be asked by other sufferers about whether I even had ME at all. This got worse when I received my Ehlers-Danlos and MCAD diagnoses. “See! I told you she never had ME in the first place, that’s why she’s got better and I haven’t”. Deeply hurtful, especially as ME still dominates my life and means I spend 14 hours of every day in my bed, alone and feeling like I’ve been run over by a bus (I’ve woken this morning with my throat so sore I can barely swallow).
It’s bad enough that for the duration of my illness my experience has been questioned by all in sundry: my work, the benefits agency, joe public, the media, the neighbours, even some sections of my family………but to have to justify myself to other ME sufferers makes me furious. That my suffering is questioned by them appalls and saddens me.
I refuse to apologise for seeing some improvement in my disease. Y’know the disease from which I nearly died. The disease which has robbed me of my entire adult life. My career, my partner, holidays, finances, hobbies and friends.
Am I jealous when other people with ME find love, go on holiday, can eat whatever they like and take copious amounts of painkillers? Yes, absolutely. I’m only human. But am I resentful? No. Not a jot. I can wish it were me but still feel happy for the other person. Still feel hopeful that one day, maybe, it could be me! It’s hope which keeps me going, because if I can nearly die from this disease and recover enough to become a certified photographer (albeit one whose photos are taken within a 1 mile radius of her home, and usually in her spare bedroom while she wears her pyjamas) anything is possible.