Thursday, September 01, 2011

The Disability Hierarchy 4: Diagnosis Matters

My cousin had a friend who was entering into his second heterosexual marriage. His first wife had died suddenly when they were both very young, and after her death he'd had an relationship with a man, in which he was physically and psychologically abused. The friend described himself as straight and said he had been taken sexual advantage of by his abuser at a point when he was deeply vulnerable. However, this chap's sexuality was a subject of immense speculation – and no small amount of amusement – between my cousin and her husband, other friends and enough of my own family for the story to get back to me. The general feeling was that this chap must be gay but pretending otherwise and his new marriage must be a sham. All manner of personal information and conjecture was sifted through, including a detailed discussion on what little interest this guy appeared to take in women's breasts.

A number of times in my life I have been privy to conversations among other white people where folk attempt to determine another person's ethnicity. It is a source of frustration and confusion when a person cannot be neatly categorised, as if, should it be impossible to generalise whereabouts a person's ancestors came from (let alone if someone has ancestors from more than one place!), it would be impossible to know how to treat them.

Marginalised people are at the mercy of privileged people in this way. People are allowed not to be straight, white, cis, non-disabled etc. but nobody is going to tolerate you unless they know which sort of substandard person they are so generously tolerating.

As disabled people, we are constantly expected to account for our status, by discussing our diagnosis, describing our medical histories and so on, even with strangers. Then we are compared to other people with the same diagnosis to make sure we fit into the popular perception of what a person with X condition is supposed to be like.

And thus one of the fundamental rules of the disability hierarchy is have a diagnosis. A few years ago, Wheelchair Dancer mentioned her diagnostic limbo – she has no overarching medical label which describes her impairments – and was responded to by rejection from other disabled people, who accused her of being a fraud (you know, that common scam of becoming a wheelchair-user just so you can dance as one). There are no medical mysteries! Either a doctor can tell you exactly what is wrong and why or else you're simply making it up.

But of course, there are plenty of medical mysteries, there is plenty of variation in the way conditions manifest and as such, lots of disabled people have long periods without a diagnosis. Other people have multiple diagnoses. Others have diagnoses which change over time. Others simply have rubbish diagnoses. For example, people who have agonising back pain which permanently impairs walking, sitting, standing etc. often lack diagnostic labels which differentiate between them and people who have temporary back problems that can be got over with rest and pacing. Chronic Fatigue Syndrome is an enormous umbrella under which which you have everything from persistent but manageable tiredness through to total paralysis and death. Mental illness criteria tend to be more specific but then our culture takes them and folk call themselves OCD for being overly tidy, or Bipolar when their mood changes suddenly.

In ten years time, there will be new labels for things people have now, and other labels will go away. Perhaps more than any other science, the terms used in medicine are constantly in flux as our bodies and pathologies are understood differently. Medical labels are utterly irrelevant to functional impairment. But they are even less relevant to who we are.

The second rule about diagnosis in the disability hierarchy is don't get a mental health diagnosis. It's a very common experience among people with chronic physical illness – especially but not exclusively women – to have our problems initially dismissed as “all in the mind” or dismissed with an actual mental health label. The problem here is the word dismissed. Because it doesn't matter how dramatic an illness is manifesting itself, the mere suggestion that it could be psychological means that it doesn't count. It is of your own making. It might as well be something that you chose to experience.

Misdiagnosis needn't be a massively traumatic experience. Let's take an imaginary person called Bonny who has Lupus. If she was misdiagnosed with MS for a while, then as long as they figured out the mistake before it became dangerous, then that really wouldn't be a problem. Conditions manifest themselves atypically. Details are missed. Accidents happen. Once I was told I had an inflamed hernia and it turned out to be constipation. I was relieved (eventually - ha ha ha! Sorry). If it had been the other way round I would have been anxious but not offended.

But say Bonny is misdiagnosed with depression. This ought not to be any kind of problem. A doctor taking all the information into account and proposing depression as a diagnosis ought not to be insulting. But the way Bonny is treated will be. This treatment may sometimes start with the doctors themselves, but if not family, friends, colleagues and employers will certainly oblige...
  • If she raises the matter of symptoms that don't fit, then she is either imagining or lying about those symptoms.
  • If she raises the fact she doesn't think she is depressed, then she is in denial or lying. She has no self-awareness.
  • If her health doesn't improve, then she is resisting treatment, she is misbehaving and failing to pull herself together.
  • If her health deteriorates dramatically, then she is seeking attention, or letting self-pity overcome her, or maybe it's because the weather is so bad this week.
  • If she has a good day or a remission, then it will be believed to be because she is working out her problems, coming out of herself, or maybe it's because the sun is shining, etc..
Whatever happens to Bonny, if she is believed to have depression, her character is defamed by the course of her health. For this reason, many people with chronic physical illness who have had these experiences make a very big noise about their rock solid sanity – to the extent it becomes quite hard for them to ask for help if they do develop mental health problems (which has a greater than one in four chance of happening at some point). They can also occasionally make statements along the lines of, “They thought I was a raving mental, but then I had a blood-test which proved that I was ill all along!”. For other people with these experiences, the habit of constantly questioning their own perception of their physical and mental health never goes away. An inability to trust yourself makes it difficult to manage any kind of health problem.

So, if that's what it is like for someone with a physical illness, how is it going to be for someone who does have chronic mental ill health? Their character is defamed all the same. Mental illness sometimes involves lapses in self-awareness and judgement, but it doesn't make a person chronically clueless as to how they are or what is happening to them. It doesn't render relapse and remission a matter of behaviour, willpower or the weather. And it doesn't change the nature of impairment dramatically. If depression or anxiety causes physical pain, that pain isn't going to be less dramatic than pain with a physical origin. On the contrary - it's likely to be harder to relax and play tricks on your mind to cope with it. If depression makes it impossible to motivate yourself to get out of bed, then you can no more get out of bed than if your limbs didn't work. Yes, the medical treatments for physical and mental conditions are very different, but our functional impairments are exactly the same.

This is the case even with hypochondria. A [cis male] friend of mine has hypochondria to such a degree that he once had to ask his GP for reassurance that he couldn't have cervical cancer, (to which the GP replied, “If you do, we're both going to be famous!”). But I have seen him when his mind has given him physical symptoms and it is a great cause of suffering and genuine impairment - even when he knows it's psychosomatic, he can't will the problem away. Instead he takes the necessary steps to recover in the same way that I respond to a crisis in my physical health. Some people don't know they have hypochondria, but convincing them that they do will not magic away the problem (and attempting to will probably increase their distress and with it their discomfort, and of course you could be wrong anyway).

One great irony is that the degree of doubt and mistrust towards people with mental health labels is exactly why some people do go into denial or lie about the nature of their illness.

Which brings me onto faking and attention-seeking. It seems to be received wisdom that some people will fake impairments for social gain - that some people will do it for financial gain seems obvious, because if there is a scam to be had, someone will have a go. Being disabled is a social disadvantage, but many non-disabled people seem to think that the special treatment we receive is some kind of privilege and as such cast doubt on people whose impairments they don't understand. Much like my cousin and her friend's sexuality.

Ironically, it is people with lower status diagnoses, including mental health diagnoses who seem most vulnerable to the accusation. And yet, quite obviously, those people who are so desperate for attention and sympathy to feign impairment will invariably pipe for very high status diagnoses. I've known of more than one person who falsely claimed to have cancer in order to intensify a new relationship. The faux-paraplegic is not such an unrealistic staple of fiction, from Little Dorrit onwards, because paraplegics have a very high status, miminising the negative social consequences of disability (please don't think I mean it doesn't suck).

Although people with Body Identity Integrity Disorder may not be motivated by attention and sympathy (and they are disabled), they also desire much higher status impairments than the ones they have - usually amputation or paraplegia.

And yet, the lower you get down the disability hierarchy, the more doubt is cast over you being disabled at all. This applies to non-paralytic back injury, many chronic illnesses, especially mental illness, but also dyslexia, ADHD and other "learning impairments". This all comes back round to the Charity Model of Disability. There is no consideration about the logic of faking impairment in these ways. Instead, like some great stingy societal insurance firm, non-disabled people don't want to award the magnanimity of their tolerance to anyone if they can afford not to.


Anonymous said...

I am Autistic, but I got a diagnosis of depression a long time ago, after that people stop listening to what I say and made my life hell treating the depression, I told them I was not depressed but it didn't matter. Nobody questioned the depression. Just now the doctors agrees I was not depressed. Those past treatments were depressing.

Anonymous said...
This comment has been removed by the author.
Anonymous said...

Courage is having the Confidence to accept that most reported "illness beliefs" are Cut and pasted copies of the same report under different names making money for the "medical farmers who rely on the system to make money with no accountability

Anonymous said...

Another group who fall right at the bottom of the hierarchy is people with bladder or bowel problems, such as those of us with stomas. On many occasion s I have been questioned when using disabled toilets because I am not in a wheelchair. So far I have just trotted out the spiel about not having to be in a wheelchair to be disabled, although I am also a part time wheelchair user. However when one woman really annoyed me and accused me of queue jumping I just whipped my t shirt up and showed her my urostomy! That shut her up! I think people like me fall into such a low place in the hierarchy because it is the thing that nobody wants to talk about, because of the ick factor.

Anonymous said...

I'm in the same situation as the other Anonymous above (only mine stoma's for a PEG tube). If I need to change my PEG dressing while out (and that's a euphemism for "if my stomach contents have been forced out of the stoma and soaked through to my shirt, leaving me smelling like vomit), it's much easier and more hygienic to do so in the disabled toilet where I have space to lay out my stuff, privacy and access to a sink without leaving the stall. There's also the fact that since disabled toilets are often less heavily used, they're often cleaner.

And all of this is before the fact sometimes I need to get into one urgently because of my Crohn's... so yeah, the sad thing is that I avoid using disabled toilets, which would make my life much easier, because these days there is so much suspicion and hostility around invisible conditions in the UK, and I don't feel like having to go into graphic detail with random passersby. :/

Wow. Apparently I have some feelings about this. Thanks for your post, Diary of a Goldfish... said...

I've really adored everything you've said about the disability hierarchy. As a woman with both depression/anxiety and an undiagnosed/under-diagnosed pain condition, it is very difficult to deal with much of this. I have two diagnoses, herniated disks and endometriosis, that have been tested, imaged, and officially confirmed. I am a part time wheelchair user, a full time cane user, and my disability majorly impacts my life. I am often afraid of availing myself of the resources at work or school for fear that I will be judged not disabled enough and excluded from accommodations forever, (even though, if I were totally faking it, the medications I'm on are disabling enough!). Because I lack a clear, devastating diagnosis to match my devastating disability, I live in fear of something being put on my medical or employment record indicating that I'm a drug abuser or a lazy worker. The disability hierarchy is terrifyingly relevant to me.

Anonymous said...

I would seriously advise anybody, whether disabled or not, to avoid if you can having any form of mental health issue entered on your medical notes.

Because when you go into hospital, ot on to the next health professional, that is the first thing they will latch on to, especially if they are inexperienced, however irrelevant it is to the problem you are presenting. And it will get in the way of all further judgements they make. said...

Unfortunately, @Charlesdawson, many of us need mental health care as much if not more than we need other medical care. For me, my physical disability will not be fatal, but my depression carries a lethal threat.

Anonymous said...

How far up the heirarchy does Plumban Oscillans come?

Cause that's what my absurd relatives believe I have...

...only my felines know differently.

The Goldfish said...

Thanks everyone - sorry I've been so slow replying to comments, I had a cold last week.

I think I'm going to have to do another post all about people with conditions of the abdomen, because that is an area where people have invisible and stigmatised impairments, which don't have the (often very badly handled) "dramatic" potential of mental illness and are therefore pretty much ignored.

People demand that disabled people account for our use of disabled facilities and any other accommodations we need, and yet when it's something that involves bowels, bladders or female reproductive organs, it's something that people don't really want to know the facts about. - Thanks for your kind words. :-)

The Goldfish said...

Oh and most recent Anonymous, I enjoyed "Plumbum Oscillans" and as I'm teaching Stephen Latin just now, it came in rather handy. :-)

Anonymous said...

Quaesītiōnem nullam!


Rebecca said...

Love these blogs - searingly perceptive and funny - thank you

Anonymous said...

You missed out something I experience on an everyday basis, whenever I actually talk about my condition.

Rediagnosis! It doesn't matter that I've had a confirmed diagnosis of something which is admittedly beyond the scope of even most consultant-level doctors (there are 30 of us in the UK), everyone from a new GP to a healthcare assistant to my bfs friend in the pub (seriously) feels fit to try and rediagnose me with something they've heard of; usually narcolepsy, but more annoyingly 'depression' ('Are you sure you aren't just depressed?' emphasis on just) or 'apnoea'.

If they've never heard of it, and can't understand it, it doesn't exist.

Sue Marsh said...

I've loved reading these! I'm right at the bottom of the heap, me.

Totally invisible illness that makes me very thin (and we all know thin = "desirable" = can't-be-ill)

Only when I get so thin that I'm clearly malnourished does the whole thing change. I've had terrible abuse for being "too thin" and (whisper it) they suggest I have an even lower status - anorexic.

You've made me really think about this, thanks xx