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Thursday, 22 May 2014

Invisible Illness Shaming

Image Credit: Robot Hugs
I'm sorry I didn't do a video this week, I had one planned but then I went to the pain clinic.
 
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?
I have an incredible GP who has been seeing me since I was in the womb & the first time she really seemed to listen & to understand how my illness affects me was Tuesday when I was too ill to go to my appointment & my mum had to go for me. Without me there it seems that she really started to hear what I had been telling her all along about my symptoms & I think that was because I wasn't there. Because however much she believes that I am really ill, she is a doctor & without tests & evidence I am just the girl with the label that NHS doctors are brainwashed into believing means as much as hypochondriac. Possibly less.

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.

10 comments:

  1. Your comments on how perceptions of different conditions changes over time are only too accurate, not just for illness but life in general. Doesn't make it any easier when you are having to cope with ignorant doctors to know that the opinions they espouse will change. Thank you for sharing your experience.
    Loved the advert for coca cola....Times really do change!

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    1. The more I think about attitudes over time the more I realised that it all changes, I can't think of any attitude that hasn't changed at least a little in the last 10, 20 years. Make that 30, 40 years & there area lot of attitudes that are un-recognisable.
      I'm just wish I could ever hope to explain to the doctors how much people will be disgusted by their advice & treatment "options" in only a matter of years

      Sally

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  2. Ughh people are idiots, Sally! I had a fractured ankle early last year, that wasn't picked up on for two months as it didn't show up on scans. I had numerous people telling me that the pain was all in my head, and this led to me getting even more upset as no-one listened except for my family GP and physio. I then had a useless "specialist" tell me that my foot shouldn't still be painful, five months after breaking it...I felt like slapping him in the face - maybe if I hadn't been told to walk on it for two months, when I had a gut feeling it was broken, it wouldn't have taken long, painful months to heal. Sorry for the rant, just wanted to share a minor experience that's along the same "you have the power to heal yourself" bullcrap! I have a lot of empathy for "invisible illness" sufferers after having had this frustrating experience. Wishing you all the best, Sally x

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    1. Don't worry about ranting, it helps everyone ^^
      Doctors are useless! I'm sorry that you had to go through that, I so wish we could just slap stupid doctors. It amazes me how most of them pass their exams, particularly the specialists.

      Sally x

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  3. I've never seen a Doctor who understood M.E., I even bought a book by a sufferer who died from M.E. about severe M.E. for my Doc but she still didn't listen! I just don't see a Doc noew unless I have to, they end up making me worse :( This is why M.E. needs more awareness! It drives me bananas :S

    Laura x
    Memichaelandme.blogspot.co.uk

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    1. I LOVE that book, the "Severe ME/CFS: A Guide to Living" right? It's amazing
      I totally agree with not going to see the doctor, it seems to be the only way. It amazes me especially how backwards the UK is, apparently doctors have a slightly better idea in other countries...at least they follow the International Consensus Criteria!

      Sally

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  4. What a dick-bleed. A friend of mine with severe M.E. is constantly patronised by the same kind of doctors spouting the same 'push through it' bullshit and it makes me so damned angry I'd like to kick their kneecaps in if I wasn't a peace-loving 'An eye for an eye makes everybody blind so make damn sure it isn't *your* eyes involved in this shitstorm' kind of person.

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    1. *Point at this comment & applauds*
      This is such a cool comment & so right. This is basically exactly what I'm feeling, said in the way that I wish I could say it!

      Sally x

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  5. I think there's an idea out there that invisible disabilities and hard to pin down illnesses are somehow belief-based and unscientific. The awful irony is that the same people then have nothing but belief-based, unscientific solutions to offer ... Change your attitude! Will yourself to feel better! Happiness brings health! THEY are the ones pushing the idea that a troubled mind can and does regularly cause massive physical consequences, an idea for which there is still little or no objective evidence. Yet they would argue they are the ones being scientifically rigorous and evidence-based.

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    1. Yes! I swear doctors just don't like to admit that there are things they don't understand.....
      Hopefully times will change eventually....I'm not expecting change but I can keep my fingers crossed lol

      Sally x

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