1/Something that is rarely discussed in the medical literature around #FND is the mental health impact on a patient of being repeatedly told they have repressed psychological trauma when in fact they don't.
2/Having your experience of a disabling and very serious neurological illness negated and invalidated year after year, and being told by medical professionals you have trauma when you don't, can over time actually end up being very traumatising.
3/ There is a running joke among FND patients that if you didn't have PTSD at the beginning, by the time you have been through the medical system, you probably will do.
4/ I experienced 12 years of this negation before finally meeting Professor Mark Edwards who diagnosed and treated my FND, and probably saved my life. For 12 years I was not only denied any medical support, but to make matters worse, was also told the illness was my fault.
5/ It was one of the most harrowing experiences of my life when a medical profession I had always respected and admired seemed to be treating me in a way I found confusing and irrational.
6/ I couldn't understand why I was being met with such unchecked aggression by so many of the consultants I saw - I was perfectly polite and reasonable and had simply arrived in their consulting room with an illness asking for their help.
7/ Having spoken with many doctors over the last few years of being involved in FND campaigning, I now understand what I was up against was a culture, a culture of negatively stereotyping FND patients based on a lack of understanding of the condition,
8/many doctors have explained to me when training they were taught by senior consultants that FND patients were time wasters, malingerers and hypochondriacs who would distract them from their real patients with 'genuine' and 'deserving' illnesses like Parkinsons and M.S
9/ as a result they were taught that FND patients should be treated harshly. Things are now beginning to change thanks to recent research, but this culture still remains, and is something as an FND campaigner I hear about regularly from the patients who contact me for help
10/ I consulted a therapist a few years ago, it seems deeply ironic that the therapist told me it was clear I had been quite traumatised by what I had been through with the medical profession, and the majority of my therapy sessions concerned this issue.
11/ Looking back the fact I was left needing to consult a therapist, not for some early trauma that had triggered my FND, but in fact because of the abuse I endured as the result of my encounters with many neurologists and psychiatrists is still something I find hard to process
12/ It is my view that the medical profession needs to address and acknowledge this issue or this culture of negation and abuse will continue to profoundly psychologically and physically harm many more patients with poorly understood illnesses.
13/ This issue needs to be discussed and brought out into the open in order to move positively forward, if many within the profession are unwilling to examine such a culture then there can be no progress.
14/ I should add I have several friends within the medical profession, so I'm very aware from my discussions with them how difficult it can be when faced with a patient with an illness you don't understand, and also of what a challenging job being a doctor can be.
15/I accept this and I recognise not all doctors behave like this, I have met many medical professionals who have been magnificent in their professionalism , kindness and commitment to helping their patients. And also in their nuanced approach to the complex FND and trauma issue.
16/Depending on which stats you look at MUS are estimated to be anywhere from 20 - 40 percent of what doctors regularly see in consultation, so this problem isn't going away, there are still many illnesses that are not currently well understood by medical science.
17/Unless there is a constructive and thoughtful approach to the common and difficult scenario of when a doctor is faced with an illness they don't understand, and an acknowledgement of past failings, we will see no progress, and sadly this harmful culture will continue.
@fndportal @fndaction @FNDHopeUK @FndFightback @FndLifewith @robertwt01 @PerezMGHLab @AlanCarson15 @jonstoneneuro @KirstyJ80 @tonesqueFND @ZacharyGrinDPT @stay_human1 @wesleytkerr @AbbyBradley89 @DrKentris @FND_Together @tbpteodoro @EdinPublishing @ConnectFnd @FNDDimensions
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