Yanub, a fellow EDS-er, said this in a recent post:
“As far as I’m concerned, doctors aren’t worth seeing unless you already know what you need and can spell it out for them. And half the time, you are worse off for having consulted them in the first place.”
This was in response to Elizabeth’s recent posts about the way her doctors treat her. Elizabeth herself, in a recent post, really got me thinking when she mentioned gender in conjunction with the very poor way she gets treated by medical types. I don’t think it can be a co-incidence that I know several men, mostly older than me, with life-altering conditions who have retained their autonomy and capacity for choice over treatment – in stark contrast to my situation and that of other disabled women I know. My father, for example, who entirely self-manages his bipolar disorder and is treated with respect by his audiologists in relation to his deafness. He’s in his fifties, he was non-disabled until he was in his thirties, he went to Oxford, he sounds and appears very middle class, and he’s a man. I think that may be a near-perfect combination of factors for demanding respect from medical professionals. Whereas it seems that having a condition that doesn’t show much in tests and is entirely invisible, along with being female, young, gay and constantly anxious around doctors, isn’t the best recipe for success with the medical profession.
Today, I finally got a letter – a month after my assessment – from the patronising, dimissive and really quite stupid psychologist who recently assessed me for CBT. In much the same way as with my quest to get some physiotherapy, my attempts to get support with anxiety have led to my being sent round and round and round the houses of the Camden PCT (which seems, as The Girl and I noted today, to have a policy of only employing idiots). It is now nine full months after my first assessment with a psychiatrist at the mental health centre – it took so long partly my referral got ‘lost’. When I worked out that something was wrong, I asked my GP to refer me to their own practice psychologist, who refused to see me as (once again) I’m too complicated a case for them. Then last month, with the referral finally having gone through, I had the mental health centre psychologist’s assessment (yes, it really is just one long never-ending round of assessments with this PCT). Her recommendation in this letter she’s just sent me? She’s referring me to the psychologist at my GP practice… It’s physiotherapy all over again. Referral after slow referral, and everyone says I’m too tricky. Oh, well I’m so sorry for bothering you with my complex case. How appallingly selfish of me.
Beyond that, though, it’s the tone of this letter that’s really pissing me off. There are several references to what I ‘believe’. She believes that she has had Ehlers-Danlos Syndrome all her life. No, I think what I told you was that it’s a genetic condition (is this not a fairly straightfoward description? should I have brought out little pictures of DNA strands?) for which I have medical evidence dating back to the age of two and which a consultant recently *confirmed* that I was born with. (Not that I can understand why this was mentioned in the letter anyway – I can only assume that she wanted to cast doubt on my ‘belief’ about it.) She believes that not a great deal can be done to help her with pain and mobility. Actually, I was just told by an anaestheologist in a pain clinic that they will not be giving me any other pain treatment than what I’ve already got (which is pretty much useless), and I’ve been having endless assessments and sitting on endless waiting lists for physiotherapy for six fucking months. But never mind that, because clearly it’s all my own fault, as ever. She told me that she did not want to be seen alone because of her severe “doctor phobia”, so I saw her with her partner (her quotation marks). I’m not even going to start with what’s clearly behind that one. She has had “brief” medical advice and is being referred to UCLH (again, her quotation marks – I don’t know what they’re about). This sentence makes light of my two-and-a-half years of hell over trying to get a diagnosis and treatment against the determination of the health services *not* to take me seriously, and of the incredible mess of mis-diagnosis that meant I had to TELL the doctors what was wrong and who to refer me to before I could get any help at all.
The difficulty is that there’s nothing overtly wrong with any single reference or phrase in this letter. It looks OK. But I know – and she knows she’s pointing out to me – that I pissed her off by asserting my own agenda, by challenging her assumptions, by having opinions, by insisting on having a witness in the room during my assessment, probably even by turning up in a wheelchair.
It stops. Now. I refuse to live in this no-treatment, no-interest, no-help limbo between ‘too complicated’ and ‘coping too well’. I would rather go without medical ‘help’ except in emergencies, and for basic medication. No more assessments – beyond the one for physio at UCLH, which I have to have, but which will be the last. No more tests. No more consultations. I will see my GP for medication (and she will give me some pain relief that I can actually tolerate). I will go to this psychologist that I’ve been referred to, unless they refuse to see me (again), in which case I will walk away – I will see them on my terms, and I will personally be arranging for detailed explanations for them regarding EDS, dyspraxia and my long medical history, and this will be taken seriously or I will not see them anymore. Easy. My life. My choices.
And I will be replying to this idiot’s letter with as much medical evidence, and evidence of my mobility and other impairments, as I can dig up from my ever-growing medical files. Just so she thinks twice before she refuses to take a disabled patient seriously again.
Any further advice on how to be taken seriously by a medical profession that isn’t sure whether it believes in your condition and doesn’t care anyway would be very, very much appreciated.
In other news, I need a new writing gig (for complex reasons that I won’t get into). I’m thinking about where to send my stuff and who might be interested in it. More thought needed. Hmm.
TG minus two days – thank God