Invisible Illness Shaming
|Image Credit: Robot Hugs|
You may have seen on twitter that I went to the pain clinic on Monday. My GP had referred me to the Neurological Pain clinic a little more than 2 month ago & I was really hoping that they would be able to help me manage my pain. I wasn't expecting miracles but my pain can get very intense & pain-killers don't exactly do a lot.
Unfortunately....my experience wasn't very good. The pain clinic doctor didn't really know a lot about M.E. (it turned out he was a cancer pain specialist) & wouldn't listen when I was trying to explain my pain & my symptoms. He kept telling me that "I was the answer to my recovery" & that I should "just push through" my M.E.
He also suggested that I wouldn't feel my pain as much if I was doing something I enjoyed, that people in positions they love (like business executives etc) don't let their M.E./fibromyalgia stop them & that accepting people die of M.E. is fatalistic & will basically cause my fate (which I hope he doesn't say to his cancer patients because I hope they would hit him).
I spent whole hour stuck listening to this (after having to fill out a 600 page form - not quite true but it was really long & I wasn't prepared for it). Understandably I was physically & emotionally drained after all that & I haven't really picked up as much as I would have liked.
Anyway, I don't mean to bitch about the doctor, as I said he didn't know a lot about M.E. I'm sure he was just misguidedly trying to help. It was very definitely misguided. He said that if "pushing through" my M.E. didn't work to start with to "keep trying".
Anyway, I am not complaining about him, I am complaining about the way that misunderstood &/or invisible illness are treated.
When did it become okay to tell people to power through illnesses? When did it become okay to make people feel guilty because they are not healthy yet?
Seriously, I have yet to have a relative try to bribe my brother to recover from his asthma, nobody ever told me that I needed to push myself through tonsillitis & I never had a doctors appointment that left me in tears when I had to go to the doctors for my viral cough. Even when I had depression I never had a doctor make me feel like I was making it up. (I mean people in-general were sucky about my depression but it wasn't okay for doctors to do that. I know I was kind of lucky with my doctors when I had depression, a lot of people are not as lucky with theirs. But it's not acceptable for doctors to be shitty about mental health issues.)
Now I'm not really sure where I am going with this post, it was really just meant to explain why I am too tired to do a video (& all the editing that goes with that) but there is more that I feel needs to be said. I'm just not exactly sure how to say it.
I have M.E. My M.E. is incredibly debilitating, painful & it makes my life very different to the lives of a lot of people I know. Even in the chronic illness community, M.E. sufferers are very unique in the way that they are affected. For people who are severely affected by their M.E. (25% of us) the level of disability & suffering we live with is comparable to the late stages of most other diseases -
International expert Daniel Peterson is on record as stating that M.E. is:
“In my experience, (it) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages".
Introduction to Research and Clinical Conference. Daniel L Peterson. Journal of CFS 1995: 1:3-4: 123-125
I am not trying to create a hierarchy of disability - there is no such thing. I am however giving you an idea of what we live with whilst doctors in the UK act like we are enjoying the attention or are too invested in our wheelchairs or are...I don't know....bored & making it up.
|Proof that attitudes change. |
Tar for your cough anyone?
Now the way that people understand diseases changes over time. In the Victorian era people thought that a "certain sort of girl" got TB (that's why it so often the cause of death for tragic romantic heroines), until recently people believed that Stomach Ulcers were caused by 'stress' & people are still quite happy to believe that mental health conditions are personality flaws or caused by people "not trying hard enough". Heck it's not that long ago that people wouldn't say cancer in public. These opinions are considered old-fashioned, out-dated & offensive by people at large (even if some assholes & a freakish number of doctors haven't moved on yet).
The next preconceived notion of illness that needs to change is the notion of M.E. (and other invisible, misunderstood or hard to diagnose conditions). At the minute the way people with these conditions are treated is offensive at best (& in the worst cases it could easily be labelled criminal) & is probably at least partially to blame for the high suicide rate amongst sufferers.
Okay, rant over. Sorry if that was a little intense.