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
9 comments:
Leaving aside the studies that have been done showing that women in pain are treated differently than men, it's difficult.
In my experience I think probably the most significant factor that changed the way medical professionals treated me was me.
Perhaps thinking about what you want to get out of each visit and from the available services overall would help? Bluntly speaking there is nothing for us EDS'ers as you know apart from pain relief (which doesn't work properly for you) and physiotherapy. The way the NHS is currently means that long term physio for chronic conditions is near impossible to get. I think in that sense you are very lucky to be close enough to UCL. For the rest of us it's a question of building relationships with local services and navigating the system. To my knowledge there is no way of getting long term physio though, too many posts have been cut etc. I would stress it's possible to do it yourself though.
I spent alot of time after I was first diagnosed in a horrific situation increasingly desperately trying to access physio, pain management etc and it was all to my detriment. It was time consuming and stressful and I eventually realised I was wasting my time chasing services that simply didn't exist, especially once I'd managed to move GP's to a supportive one who did all he could to help. I stopped bothering with any of those fights and instead started concentrating all that energy on myself, which turned things around slowly but surely. Ultimately the only answer for us is effective self management and I'm of the opinion that's unlikely to be taught well by someone, however well meaning with no personal experience of the kind of issues we face day to day. The damage that has been done to our bodies by lack of diagnosis has been done and cannot be undone, but anger is just a stage we all have to get through on the way to acceptance. Personally, I believe the priority is to ensure this doesn't happen to another generation.
Good luck, time I suspect will be the biggest factor in all this. BG x
I believe all sorts of things. One day I will get the guts to copy paste some of them to you, as evidence that my empathy is well founded.
Es
p.s. Gender, especially when it's not even gender normative, which is not male, freaks doctors out.
I definitely hear where you are coming from. I was diagnosed with fibromyalgia almost a year ago and had to give up my beloved job as a vet nurse as my body couldn't cope. My rheumatologist told me that I had fibromyalgia because I was depressed and put me on anti-depressants but gave me nothing for the pain. Fortunately, my GP was smart enough to realise that I had reactive depression and dismissed his claims.
My physiotherapist has told me there is nothing he can do to fix my chronic knee pain (which is separate to my fibromyalgia) because my fibro means my muscles will never be strong enough for me to learn to walk properly. I am at a dead end. I have given up on doctors and am trying to live life on my terms. It is scary, but at the same time it is liberating. Best of luck with your journey.
Hi Naomi,
I wanted to let you know I'm going to be on the phone for the Ouch podcast next time so if you listen it'll be me (ilikerivers from LJ). It's at 7.30am my time on my Tues, I don't know what time it will be for you. The person calling me said they knew of you. :D
I'm coming home! Tum ta da tum! The Girl to the Rescue! I will punch all the evil doctors and stun them with my charisma, panache and style (not to mention that I have just survived a month in Sub-zero temperatures- that has to be worth something). Onwards and upwards and Camden PCT can stick it where the sun don't shine.
So there.
Good for you! I did a similar thing myself. I (luckily) had leeway with an insurance plan that many drs are covered under and went through an interview process of health care professionals. and NOT them interviewing me, but ME interviewing them. Laying down MY terms and if they could deal with it, they went on 'trial basis' and they know it.
So far, I have been rather pleased with the results (knock on wood). After years and years of crappy health service and being told it was 'all in my head' and that I was 'seeing them because I was seeking attention' and all of my complains were psychosomatic (including terrible dabilitating migraines and abdomnial pain), I seem to have amassed a treatment team who at least pretends to treat me as a Human Being and Not a condition. And seems to value my opinions and recognize that there is no better Expert on me, than Me!
I honestly hope that you are able to get the help and treatment you need and deserve.
best of luck!
I'm glad to be of service in your journey away from being medicalized. We all need medicine from time to time, but none of us need to be medicalized.
"She believes that she has had Ehlers-Danlos Syndrome all her life."
Ahahahaha, wow. You don't "believe" you've had a genetic collagen disease all your life. That's a stunning display of agenda-biased ignorance.
Hi, I'm a long term sick possible EDS patient (waiting to see specialist) and I've been treated pretty much exactly how you have been by hundreds of doctors over the past 12 years! My uni GP service made me go to see a psych who even tried to persuade me that it might all be somatisation disorder and spent hours trying to get me to admit that I couldn't prove that I hadn't been sexually abused as a child and have dissociative amnesia! When I finally got annoyed by all of this, that apparently 'proved' it was true!
With regards to your father, I can guarrantee that it isn't the oxbridge middle class thing that gets him respect. I find the opposite in fact: rubbish doctors always want to prove you wrong when the find out that you have better academic qualifications than them!
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