I’m sure there are people who read my blog that think I’m a bit naive. That I don’t really know what I’m talking about or that my knowledge of my illnesses is a bit simplistic. They’re probably right.
For the first 6 years after I was diagnosed with M.E. back in 1994 I was like a woman possessed. I spent every waking moment researching the disease. I followed the ridiculously heated debate over the name. I tried every wacky treatment from every obscure internet site I could find. I followed arguments on forums between patients that, to be frank, became stressful and deeply upsetting. It was exhausting both physically, mentally and emotionally.
After 6 years I had a Eureka moment: there is no cure for M.E. If there were none of us would be sick. And I also realized something else – if there is no cure then I have to start living with my disease, not wasting all my energy pointlessly being in cyberspace. I had a good think about what I needed and decided that it was company, being as though I was bedridden and lived alone. I also needed purpose. So I stayed on just one support group online and also volunteered my time to 2 ME organisations. I then subscribed to just one charity and received their magazine so that they could filter all the information for me and I could read the highlights. I quit everything else, letting people less sick than me battle for recognition and research.
In the past 5 years I’ve had to delve into both the Ehlers-Danlos world and the Mast Cell Disease world and could easily have found myself once again spending my entire life immersed in sickness – I refuse to go there. When it boils down to it, there are less than a dozen really useful papers on EDS and MCAD and once you’ve read them you kind’ve know all you need to. I will let the charities live and breathe EDS and filter their knowledge to me because I’m too poorly to do more, and I will have to let people with MCAD who are less ill than me fight for its recognition and treatment.
Several good things have come out of this step back from my sick world. The first is that I actually get to have a life outside my diseases, which has been vital for my mental and emotional health. It also means I have the energy to follow other topics and have something other than illness to discuss with my nearest and dearest. I also feel I can be slightly more objective when discussing my diseases – when you’re investing all your time and emotional resources into any one thing it can be difficult to see the wood for the trees. I also hope I write my blog posts in as plain English as I can – “inheritable disease of the connective tissue” means absolutely nothing to most people; “I was born with faulty collagen” is slightly easier to get your head round. I do get people who comment on my blog that I haven’t quite used the correct terminology and I feel like saying “yes, that’s the whole bloody point!” because we don’t all have a degree in biology and find all the medical jargon confusing.
It’s so easy to fall down the rabbit hole and find yourself in a sick world where nothing is normal. To become obsessed with finding a cure, even though you know in your heart that none currently exists. To expend every precious morsel of energy defending your disease to some ignorant internet troll then your evening sick with exhaustion. To become self-absorbed and, frankly, a bit boring to those around you. I’m aware I do all of these things sometimes and need to rein myself in.
It’s a good thing there are people who are obsessed with my diseases because otherwise recognition and research would never be achieved, but I’m too sick to be one of them. And that’s OK.