When healthy people talk about illness they seem to think sick people are all the same. They have a disease with a defined set of symptoms and a set treatment plan and that’s the end of that. Only of course it’s not.
People with hypermobile Ehlers-Danlos Syndrome are all different. One member of the family may have mild symptoms that don’t cause them any problems (like my brother) and others may be so ill they are frequently hospitalized. One person with hEDS may also have POTS and another not (I have dysautonomia but not POTS). Some people dislocate joints willy nilly yet I thankfully only sublux and then not until I reached my forties. Yet we all have the same genetic disease.
Mast Cell Activation Disorder is even worse. I react to almost all medications, herbs and supplements but so long as I avoid high histamine foods can eat quite a varied diet. Other people can only tolerate a handful of foods but can take as many drugs as they like. I’ve had grade 3 anaphylaxis but never any swelling, while other people swell like a balloon. I have seizures, other people don’t. I get hives but no joint pain. Other people have awful pain but no hives.
M.E. is a spectrum disorder, in a similar vein to Multiple Sclerosis. There are those who are mildly affected and can work or raise children, while others are completely bedridden and reliant on round the clock care. Some people sleep 23 hours a day while others are plagued with insomnia. Some people are physically knackered but mentally fairly good, while others have horrendous brain symptoms but can walk the dog every day. Some have swollen glands and a permanent sore throat, others don’t.
It’s easy to beat ourselves up when we read about a fellow sufferer trying a drug or treatment which has helped yet when we try it we end up ten times worse, but what works for one person simply doesn’t work for another. I actually groan out load when I read yet another “x, y or z cured my M.E.” story in the newspaper because everyone I know will then ask if I’ve tried it, like I’ve lain in bed suffering unimaginable horrors for 24 years not bothering to try every fucking treatment known to mankind. Or someone tells me about a hEDS patient who ran the London Marathon, the implication being that if only I tried harder I too could be an athlete (I am an athlete, cos I shower twice a week and it’s the equivalent of climbing Great Gable Fell!).
I wish I had a well defined disease which could clearly be seen on an MRI scan or under the microscope and then cured by a tablet or surgery, but I don’t and it’s that which causes suspicion. Suspicion that I’m not, in fact, sick at all because conventional tests look fine. And I wish I had a disease which affected me the same way it affects every other sufferer in the world, but I don’t and it’s that which causes confusion. Confusion that someone else with M.E. can still work, or that someone else with hEDS can do pilates, so why can’t I?
I can’t measure myself against anyone else. Although I share similarities with other patients our stories are different. I have M.E but I also have hEDS, MCAD, HIT, endometriosis, adenomysosis and a brain injury all of which interact with each other. My MCAD affects my M.E. which impacts my hEDS and my four weekly menstrual torture affects every sodding thing! My inability to tolerate drugs has massive implications for treatment and effectively rules out surgery, as does my inability to be able to exercise in any form. I’m really happy when other sufferers find something which helps but the complications of my diseases means that someone else’s saviour will probably not be mine, especially when I’ve been ill for nearly a quarter of century and irreversible damage has already been done to my body.
We are similar yet unique.