Much as I hate to admit it, I’ve been feeling a little s******d of late (yes, the word makes me very uncomfortable). Having a prolonged and confusing flare-up of my Endometriosis has led to me slipping into a strange and disconcerting existence where the Fibromyalgia doesn’t have to fight so hard to retain dominance. The additional issue that my GP appears to believe that Fibromyalgia doesn’t need to be treated at all has left me having to figure out my own regimen without access to any kind of safety net or physical support network. Continue reading “Let’s talk About Stress, Baby…”
When I started this blog, it was my aim to keep it as apolitical as possible: a decision that has has been quite difficult to maintain with all of the disability rights issues that are at the forefront of a lot of some very harsh government policies, in the UK.
But, just for today, I’m changing my mind.
Those of you who read my blog regularly will know that I have a HUGE issue with physical illnesses being treated as though they are purely psychological. This tends to occur when organisations are tardy in catching up on the latest research or are dealing with a rare disorder for which they need more ‘proof’ of existence. In addition, in the UK every treatment has to be evidenced based; which is great for the most obvious illness like certain cancers, but not so great for complex conditions that create ‘cascade failures’ across multiple systems. So, even if 20,000 patients are making the same statement until there is some kind of empirical evidence, those statements will always be treated as anecdotal. I want to show you why this can be terribly problematic. Continue reading “A call To Action: Believe In Bethanie”
A couple of weeks ago I wrote this post, detailing the trouble I was having with the only mode of treatment I was being offered (there will be a post next week about re-discovering a privately funded treatment that had been right under my nose, and why I was right to be suspicious of the program); the psychologist that I was dealing with kept trying to draw me back into the schedule that I had explicitly told him I wanted to be extricated from. As I had explained the link between Ice Hockey and an alleviation of my symptoms at an earlier meeting, he kept trying to use ‘sports based language’ as a psychological ‘trick’ to get me to relax into his way of thinking. What he didn’t know, however, is that my sister is a psychology major, so I’ve learned a lot about human behaviour and manipulation over the years. A non-sports fan, and more importantly, a non-Hockey fan trying to ‘match and mirror’ what he thought my language would be just made me even angrier – it was a blatant attempt at control, and further proof that I could not place my trust in him. This is the email I replied with. Continue reading ““First, Do No Harm…””
Due to an interesting encounter with another GP, I made a second Subject Access Request in order to actually see the values of cortisol in my blood, plus whatever statements the previous GP had made about my condition. Gentle reminders usually have to follow the initial request, and this approach has worked in the past, but even with the nudges, all I was getting was silence. As the blood results were my real concern I decided to try and get that information in isolation from the rest of the records: and getting my tetanus booster provided the perfect opportunity. Continue reading “The Patient By Gaslight”
Is it ever possible to extricate yourself from the preconceptions of any medical professionals you have to deal with? Continue reading A Medical Trojan Horse?
I’ve detailed in the posts here and here how difficult it was to get someone to take my symptoms seriously. One of the most important aspects of that journey was how convinced the doctor was that I was suffering from some kind of anxiety – to the point of talking over me when I tried to protest. At the time, I just believed that he was making a huge assumption based upon one blood test. Nearly nine months down the line inconsistencies have surfaced that suggest something else may have been at play. Continue reading “A Hidden Agenda?”
We’re heading towards Endometriosis Awareness Week, and my original plan for this post was a ‘listicle’ outlining some of the prevailing myths around this debilitating illness. The first ‘myth’ I was planning to bust was to be what I perceived as confusion surrounding the diagnostic tools that are currently in use. I was constantly hearing from other sufferers that the only definitive way to diagnosed this illness was via laprascopic surgery. Nonetheless, my diagnosis was first floated after an abdominal ultrasound (the type used to view a foetus) and every last one of my adhesions was clearly visible on my MRI. In fact, the MRI showed more than the surgeons had been able to see during my various procedures.
I began to wonder if this was due to some kind of cultural disparity between the United Kingdom and the United Sates. It does take an age to get diagnosed in both countries but British women fair a little better, waiting, on average, eight years for the condition to be spotted in comparison to the twelve years that American women face. I believed that maybe the UK was simply more likely to use imaging tools, initially; moving on to surgery if the symptoms persisted despite the scans coming back clear. While researching the reason for what I believed was a state of wildly differing diagnostic methods, I stumbled upon a medical paper (The Endometriosis Syndromes: a clinical classification in the presence of etiological confusion and therapeutic anarchy), written in 2003, by Professor Ray Garry. Reading this paper I came to understand why those different approaches exist. Continue reading “Is This The Reason Why Endometriosis Treatments Are So Ineffective?”
If you’ve read my previous posts you will know that it took getting a confidence boost from a pro Skateboarder for me to have the final showdown with my GP, that eventually led to him being proved wrong about what was happening inside my body. What that last consultation showed, though, was that I actually had a very well stocked arsenal but I was using it both incorrectly and inefficiently. With that in mind, here is a rundown of the tools you can use when dealing with an obstinate medical professional. Hopefully, these will eliminate the need to be struck by inspiration. Don’t get me wrong, inspiration is wonderful (and I will forever be grateful to Rodney Mullen….) but it’s not always as forthcoming or guaranteed. Continue reading “6 Tips For Dealing With A Difficult Doctor”
Read Part 1 here
I adore Rodney Mullen. For those of you who don’t recognise the name, he is the Godfather of modern street skating. Pretty much all of those impossible looking tricks you see people doing (the ones that look like pure wizardry) were invented by him. Now, I’m not a skateboarder myself, but at that particular time I was going through a Roller Derby ‘fresh meat’ training program (the Derby thing will get it’s own post in good time…) and I was finding that Mullen’s TED talk ‘On Getting Up Again’ was really helping me deal with getting used to hitting the floor so often. At least, that’s what I told myself – in truth, I just really like hearing him talk. Continue reading “The Uphill Struggle For A Diagnosis Part 2”
A lovely woman I used to work with saw me wince as I tried to close a door. She asked all the usual, polite questions – was I okay, had I been injured – to which I replied that my shoulder was just inflamed, as all my joints were wont to do. No big deal; I was coping. A few more delicately presented but probing enquiries led me to explain that I had pretty much given up on getting any help from my GP: Osteopathy, yoga, and the Endometriosis diet were holding my body together, despite all the pain. She then told how all of her mother’s symptoms were dismissed as being related to old age, so she decided to keep a pain diary. Lo and behold, a pattern emerged, and her doctor could no longer continue to ignore Continue reading “The Uphill Struggle For A Diagnosis Part 1”