My first thoughts as I left the appointment probably shouldn't have been "how on earth do I blog about this". Considering the discussion we'd just had it probably should have been "actually I don't fancy the idea of a progressive neurological disorder" but blogging is easier on the psyche.
When I started to write, five years ago today, it was under a pseudonym, no-one in the tiny corner of the internet talking about being bendy and broken bureaucracy knew who I was, so it didn't really matter what I said. Even so, I was never comfortable naming the medical professionals I was discussing, it didn't seem fair to leave a critical record of a doctor that they could find without putting my name to it too. Five years on, this blog is connected with my real name, and whilst I still don't name doctors they would certainly be able to recognise themselves should they care to look.
Which is why its now becoming more difficult to be so honest, but the point of a blog is to be that honest, and its important to find a way to do so, to be critical or complimentary in a fair way. So, before I start to explain what was discussed, some context; my rheumatologist is a lovely man, kind, gentle and empathetic. He takes time to explain things and is generally the kind of doctor who'd sit and hold a patient's hand should they need it. His intention was clearly to reassure me and be supportive not unkind or cruel, but, many of the explanations he gave me were also factually incorrect, and it would be dishonest not to address that.
I didn't feel I was really able to communicate just how bad the past six months have been health wise, but we discussed the investigations from respiratory & ENT. Doctors aren't generally trained in disability medicine, there isn't really such a speciality, the closest you could get would be to combine a GP, a general physician (who generally don't exist any more) an Occupational medicine specialist, physiotherapists, Occupational Therapists, social workers CPN's and psychologists with a bizarre side order of some of the skills used by benefits assessing doctors - preferably their pre Work Capability Assessment skills! This lack of speciality means that NHS doctors generally don't pick up on the cues patients give about their level of disability. 'My neighbours bring meals in' doesn't typically translate to 'I don't have the co-ordination, strength or dexterity to prepare myself food'. To be fair, it's not supposed to, the whole training of NHS doctors is geared towards curing patients and returning them to health.
When I heard the rheumatologist say that Ehlers Danlos isn't degenerative my initial thought was 'eh, what, are we talking about the same condition?' Then there was the 'EDS isn't disabling by itself but the chronic pain can be' which confused me further - generally speaking dislocating, falling over and lacking enough muscle stregnth and co-ordination to properly work a remote control are fairly disabling things, with or without a side order of chronic pain. But, it was really the statement that EDS doesn't make people floppy that finished me off. I came away wondering if that was really the case, if somehow myself and all the other floppy bendy people and the expert EDS doctors might be wrong, but no, a quick google reassured me that if even the official NHS conditions information list EDS as one of the potential diagnosis related to hypotonia then it's my rheumatologist that's wrong, not me.
The work is generally good for you explanation made me giggle on the inside - my doctor has no idea what I do, if he had he wouldn't have given me a patronising explanation about not giving up and doing nothing, but like with the hypotonia and degeneration misinformation I just didn't have it in me to correct him. It's very difficult for both patient and doctor when the patient is extremely well informed about a condition the doctor is less familiar with and not dealing with the situation correctly will rapidly derail a consultation from either side. I was also left somewhat baffled by the 'spines are supposed to rotate...like in Chinese contortionists with EDS' theory...um, yes, of course spines are supposed to rotate...but I'm fairly confident that individual bony bits are not supposed to move off on their own, rotate in a different direction to the rest of the spine then get stuck there like an Occupy protest waiting for someone to move them along.
In what was a clear attempt to reassure me about the DWP my rheumatologist explained that he would certainly fill out any forms he received from them, and that he would emphasise that I'm being tested for an unknown degenerative neurological disorder too, so that should hold them off. To his credit he was aware that interpretation of the descriptors varies...but definitely not aware of what those descriptors are or the intention behind them. Funnily enough I was not overly comforted by this, and required a great deal of reassurance later from a GP friend that 'no, you're not mad', 'yes, EDS is degenerative and it very definitely makes some, but not all people floppy'.
My rheumatologist is correct to state that we shouldn't assume everything is caused by my EDS in case we miss something, so I'm being referred to Walton Neurological Centre for some tests. These are tests I've had before, prior to my diagnosis of EDS which were all completely normal then so I'm not expecting that to be any different now, but it does concern me that they are being ordered because of the assumption that EDS doesn't cause floppiness, or to term it properly, hypotonia.
It also concerns me that this is my doctor long term. Over the years I've found that some doctors instinctively and immediately grasp the fact that if your collagen, or building block of the structures is defective, then pretty much anything can be affected by that, others simply can't get to grips with that concept and talk alot about 'impossible'. Those doctors who do understand talk about 'not normal except in EDS'. This means I'm faced with the increasingly common dilemma many people with chronic and 'rare' conditions face, lack of medical expertise. I have a kind, pleasant doctor, but I'm at a bit of a loss as how to educate him on a condition that falls within his speciality but which he is clearly misinformed upon.
As people use the internet and social media more often, this situation will become more frequent. Most patients name doctors when talking or writing about them, not understanding that could leave them open to libel accusations and certainly prevent any positive therapuetic relationship should the doctor see their comments. Doctors using social media have picked up on this issue and it's fantastic to see professionals discussing it in an open, constructive manner which patients can read should they wish to do so. But as patients we don't have any codes of professional conduct to follow, so its down to the individual to act responsibly. It is certainly an issue that we as patients should also discuss amongst ourselves and the most constructive way forward seems to be to have that discussion alongside doctors to find a workable balance.