I’m not sure how to title this post, it deals with something I have been thinking about for years, off and on. Something I know I need to face up to but never quite have the courage to.
Basically I have been lucky enough to have other issues besides depression, namely M.E/CFS, yet I have felt consistently isolated from the M.E/CFS support community for as long as I can remember, my Mum still reads the magazines and suff and perhaps as my M.E/CFS isn’t as bad as it used to be I use it as an excuse to shy away, I’m not ‘one of them’ anymore. The truth is I never was. This explains why.
Attitudes such as this from the daily mail (admittedly not a bastion of sensible and sympathetic thought, but I have seen this attitudes in M.E support magazines and online. The quotes link to the articles
In the article copy itself “Patients as they are dismissed by their doctors with ‘it’s all in your head’ attitudes when many patients have clinical signs of illness”.
It is articles and opinions such as these which have made me feel distanced and reluctant to get involved in the M.E community. I was diagnosed with M.E/CFS at age 11 yet have always suffered depression too, with the latter being more destructive and debilitating the last five years.
Such ignorance and stigma aimed at mental illness from a community that is about the support of those with an often misunderstood condition is disgusting. It is fine to suggest M.E is a psychical illness, as I believe it is myself, but to use such ignorant, insulting and divisive language is unacceptable. By asserting that M.E is a ‘real’ illness because it is not ‘all in the mind’ discredits the idea of mental illness and suggests that those who suffer are not ‘really ill’. Something which is especially painful as many M.E sufferers know exactly what it is like to be on the receiving end of such ignorance. There is a prevailing though amongst many in the M.E community that it’s not ‘just’ depression, that depression would be easy to deal with, that a diagnosis of depression is just that of a ‘not real’ illness. How am I supposed to find support amongst groups that have such views or do little, if nothing, to challenge such stereotypes?
The comments and quotes above (even websites such The M.E Research UK carry a caveat that M.E is a ‘real’ illness, the implication of which is that if one accepts a psychological basis then the illness somehow becomes ‘unreal’ or ‘fake’, it may be intended by the people who write such sentences but it certainly comes across that way) reinforce this attitude that depression is not an illness; depression does have ‘clinical signs of illness’ as do other mental health problems. No one decides to have a mental illness. It doesn’t matter if an illness is ‘all in your head’ it’s still an illness. These medieval attitudes towards mental illness do nothing to further the cause of M.E/CFS acceptance. A blatant refusal to accept or support any treatment that has even the merest hint of a psychological basis, even if it is merely a way of helping someone to cope with a chronic illness, does many patients no favours. To draw such stark battle lines between the psychological and the biomedical smacks of ideology before people. I am quite frankly sick of reading a lot of M.E/CFS support communities online and the letters in magazines as I am made to feel unwelcome, I am made to feel like a lesser human being because I am mentally ill. I feel these communities have nothing to give me, I cannot sit back and read people describe one of the most painful and debilitating experiences I have ever gone through as not a ‘real’ illness or ‘all in my head’, with the implicit assumption that my suffering is not worthy of the same sympathy as that caused by a ‘real’ illness. The pressure to be the stereotypical ’cheerful despite a horrible illness’ nice little ill person, I could never stand it, yet because of this crazy stigma about not being ”just depressed”. I always felt alienated by the cheery attitude of groups like AYME and never felt I could be open about how utterly fucking miserable I was. Someone might thing I was actually depressed or something and then I’d ruin their whole little cosy distance yourself as far as possible from the nutters routine. There always seemed to be a shadow, an unspoken but strongly implied notion that to admit to being depressed was to give in, to defect to the side of evil psychiatry and somehow tar the whole thing with being ‘not really ill/all i your head/just making it up’ and make everyone else look bad.
I sometimes wonder if my depression was caused, or at the very least exacerbated, by this belief. Actually reading the above is it any wonder I became depressed? That my teenage angst became such a snowball of tumbleweed gloom? I faced a miserable adolescence of being told I was depressed, then that I wasn’t that I was ‘really’ ill. Now I can see the effects of this; the way I feel trapped and unable to take the time and rest needed to help with my depressive moods, the way I feel I have to deny them, to push them away to never feel them fully; yet I know I often need to to let them pass. Perhaps most importantly in the way I find it so hard to accept that when I am incapacitated due to depression it is genuine and I don’t have to ‘snap myself out of it’ and that it is real.
Sometimes I look back and wonder if I had ever had M.E at all. I wonder if if it wasn’t ‘just depression’ all along and I got shoe horned into another diagnosis at an age where I was too young to know what going on, as if people did not want to accept the possibility of an 11 year old fed up of the world and already feeling alienated and wanting out. People telling me I’m not depressed, people telling me I am. I know I was certainly utterly fucking miserable and this horror at going to see a psychiatrist (only bad crazy people go to see psychiatrists), all this insistance that I am ‘really ill’ and not ‘making it up in your head’ or other such insulting misconceptions about mental illness. Was it any wonder I couldn’t admit to be depressed?
Was it just easier for people close to me to accept a physical ‘real’ illness than to face up to a mental illness? The interactions between mind and body are not fully understood, we do not know what M.E is and what causes it. Whilst I accept many psychological treatments for M.E in the past have been inhumane and damaging, even fatal; they have been to many a sufferer of mental illness too. This is something that goes unacknowledged in this debate; that those with mental illness have been treated abominably by psychiatry too, it is not just some crazy vendetta ‘psychiatry’ has against M.E.Perhaps the real pain comes not from the treatment itself (which are often brutal and damaging), but how the mentally ill are often treated as less than human during those treatments? The anger so many seem to feel at being treated as mentally ill seems to go deeper than any rage at unsuitable or ineffective treatments but goes to the core of our prejudices surrounding mental illness, that to be mentally ill somehow renders you less than human. Renders you worthy of scorn, worthy of being the butt of the anger felt at suffering a misunderstood illness; “hey at least we’re not mentalists!” is another seedy undertone that creeps out of these attitudes.
To refuse to acknowledge any psychological aspect of M.E is narrow minded. The assumption one draws from such attitudes is that if something is psychological in nature it is somehow ‘not a real illness’. At the end of the day, if M.E is bio-medical, psychological or a combination of the two; does it matter? Whatever the cause we still have to live with debilitating symptoms. So please stop this prejudice, M.E is a real illness that can cause almost unimaginable suffering and exactly the same can be said for mental illnesses such as depression.
So yeh, M.E sucks, depression does too. Your experiences with M.E now matter how horrific do not give you the right to stigmatise the mentally ill, whether directly or not. I can tell you that all this does affect me, it does leave me feeling unwanted and somehow ‘wrong’.Like I must place my M.E symptoms on a higher pedestal of being ‘really ill’ as if there is a class system of disability and ‘mental illness’ is right down at the bottom, in the pit marked ‘common as muck’.
To put it simply; whether you mean it or not every time you describe M.E as being ‘real’ you imply mental illness IS NOT, which is FUCKING WRONG AND IT HURTS.
