I thought I’d better write something, even if it is jumbled and not as astute as I’d like; brain fog is rampant today.

I’ve had M.E for most of my life, since I was 11. I’m now 30. I’ve gone up and down, I’m currently in an O.K mode, I can fake being normal for a bit and do stuff like get out the house and enjoy myself, however I’m still ill. Every so often I convince myself I’m not and that I’m just being lazy and if I really pushed myself I’d be fine. I’m sure this is down to the crap I’ve internalised from years of being told I wasn’t ‘really ill’ and I just needed too try harder. Ironically I’m having a bit of a bad day today as I had two days in a row where I didn’t have my usual ‘siesta’ big nap in the middle of the day thing. It always takes a while to catch up.

I’m at the point now where I don’t think about recovery, I’m just trying to live my life in a way that I can manage to do some stuff and just cope as best I can. This is made immeasurably harder by the constant stream of ‘scourger rhetoric’ from this government and the media. I’m currently in bind as to whether I can work or not and if I can work enough hours to qualify for tax credits or if I can do permitted work on my benefits.

I also have depression. I have often felt I am in a difficult place as there has been, and continues to be, some prejudice within the M.E community around mental illness. It is no secret that M.E is not a mental illness and should not be treated as such but often some go too far in their assertions and stray into stigmatising and insulting language around mental illness; saying things such as ‘I’m really ill it’s not ‘just depression‘ ‘ or ‘M.E is a real illness’ – the subtext here being that mental illness is not ‘real’. I have no patience for that and I have yet to see any valid excuse for it.  I have blogged about it before and it is something that makes me feel unwelcome in many M.E support communities. Thankfully I have found some amazing support via twitter and I suppose it’s been so long I’m just sort of used to bumbling along on my own.

I’m not going to write some twee crap about illness elevating me to a state of saintly insight and use metaphors about ‘journeys’ and ‘tunnels’ and ‘woods’. I’m certainly not going to write a terrible poem.Or insinuate bullshit like ‘there’s a personal agency in getting better’ or become god forbid it ‘inspirational’. But I have M.E, it’s shit, the government is trying to cut support to people with disabilities and chronic illness just like myself. I’m not a scrounger. I’m not making it up. I don’t live a life of luxury on benefits. I have paid taxes. I am actually ENTITLED to support because thats the whole point of the welfare state so yes I do believe in a ‘culture of entitlement’ . I am also entitled to respect as a human being regardless of how much I earn or if I work or if I poop out sparkly rainbows or whatever.

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Today is Blogging Against Disablism Day so I am going to participate by writing some of my thoughts, rambling as usual, about invisible disability and ‘passing’ as abled and issues with identifying as disabled when you, to use a much hated phrase, ‘look normal’. I ‘look fine’. I don’t currently use any mobility aids, though I have done in the past. I can easily ‘pass’ as abled and this sometimes makes me feel like I never quite fit in anywhere. I have been attacked in the past, see some of the lovely comments on this post for example, for not being disabled enough and told it’s insulting for me to claim the label and I have questioned referring to myself as ‘disabled'; partly over issues like this. I’m not mentally strong enough to cope with the antagonism so I’d rather be a wimp and avoid it. But according to the UK legal definition of disability, I am disabled. I live with chronic physical and mental illness (M.E/CFS and a chronic depressive disorder) that have a substantial impact on my ability to live my every day life. I feel that maybe some of my reluctance to use the term has been down to internalised disablism and trying to convince myself that I won’t be ill for ever and one day I’ll be ‘normal’ again. At the time of writing I have been ill for the best part of twenty years, the majority of my life, so I’m not quite convinced of the temporary nature of things and have pretty much accepted that my chronic illnesses are a disability that will probably be with me for the rest of my life, though they may have good and bad patches. I also live with a lingering anxiety that I am seen as a ‘dirty scrounger’ or ‘malingerer’ or ‘work shy fraudster’. This has only increased in line with the governments attacks on disabled people and the benefits systems well as the media complicity in all of it. There is a general idea within society that ‘you can tell’ if someone is ill or disabled and those who ‘look fine’ are fine. There is a very narrow understanding of disability in society, which for the most part excludes invisible disability. Conditions such as depression (check), M.E (check), bad backs (I’m ok on that one so far) and other invisible disabilities are often used as journalistic shorthand for ‘faking it'; often accompanied by ‘scare quotes’. In the popular imagination of of modern Britain people with invisible disabilities are just ‘putting it on’ and waiting for a huge benefits cheque whilst we lounge around our mansions watching massive flat screen TVs, fabricating imaginary medical conditions to con the ‘tax payer’ out of money. It feels like I see two sides of disablism; I am privileged as I can appear abled so I am not subject to abuse for appearances and as I ‘look fine’ I hear things people wouldn’t say if they knew about my disabilities or if I was visibly disabled. Yet at the same time I face a different sort of prejudice from being invisibly disabled, one of disbelief. I look fine so I must be fine. I don’t need a ramp to access anywhere so everything’s ‘accessible’. I suppose it feels like I experience disablism from both an outsiders and insiders perspective, or from some muddled area in-between.

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I’ve signed up, a few days late due to my impeccable organisation skills, for NaBloPoMo at BlogHer for Feburary, this month’s theme is ‘Perspective’, one which I think fits well with this blog.

For this first post I am going to write on something that has been brewing in my mind for a long time.

Perspectives on physical and mental illness, what it’s like having both.

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Ironically I think I need more therapy to get over some very misguided CBT I had as a teen and all the resultant shit that sprung from it.

It affects stupid things. I still feel guilty for being ill and feel a need to search for a ‘proper’ reason why something is wrong or I feel like crap. I used to see psychiatrist for CBT for my M.E/CFS when I was a teenager and she made me do a test, if I didn’t have a temperature or any ‘real’ signs of illness I wasn’t ill and I had to go to school. I’d go to school and couldn’t cope so I’d end up in the sickbay where I was only allowed to stay for a certain amount of time before  being made to go back to lessons or have my mum called. If my Mum was called I’d get yelled at for not doing what the Dr said. I spent about a year or two of my life puking up almost every day, once memorably on my French teacher.

I was threatened with being sent to a locked psych ward in Southampton or somewhere miles away from where I lived.

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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

An online comment:“I have given up going to the Doctors for them to tell me its all in my head & try to prescribe me anti depressants – seriously!? I didn’t wake up one day & decide I had this condition.

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.

 

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