As I read through it, I could relate to a lot, through being a parent of an adolescent with FND (dx June/Nov 22) on their journey and my own and through the Communities I interact with.
I am sure many of you too, can relate. This study is based on a small selection of FND patients and I hope things change soon.
Thinking back to our original consultations, we were referred to the neurosymptoms.org.uk not once but twice, how can they expect someone to navigate this alone.
The term "othering" is a new one to me, this is just a section of the article:
3.3.3. Theme 3: “Othered” by the healthcare system
Through interactions with the healthcare system, many patients experienced a feeling of being different or less legitimate than patients with other medical conditions.
This “othering” happened in both subtle and more explicit ways, and led patients to feel set apart and separated on the basis of having FND. This process of othering mainly occurred through negative professional interactions, though it was not the only route.
For several patients, the route to diagnosis was protracted and difficult – for example they saw multiple specialists, had to seek care privately or attend the emergency department repeatedly for years before a diagnosis.
Many perceived a sense of confusion about FND from professionals, in contrast to other conditions they sought help for.
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Lady4
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Thanks for posting. Interesting article and no surprise to most of us! It blows me away that FND is apparently quite common, but they don't teach it at medical school. That would be like an English Literature degree with no Shakespeare!
Hopefully now some students will opt to specialise in it and patients get the proper validation and are treated equal. At the end of the day we are all floored by the dx (well at least I was, sitting alone in the dark reading pages of the neurosymptoms.org.uk website and various links in tears) and their delivery needs drastic improvement and we the patients/carers need to call them out and hold them accountable to make change happen.
Sending us to internet sites is poor practice and lazy and whilst education is empowering, as the article highlights, this should not be the essential part of the treatment plan.
I think medical ignorance is actually pretty widespread. Hypothyroidism is pretty common, around 2 million people in the UK are on Levothyroxine, mainly women, but the continual stories of medical misogyny, neglect or just downright bizarre BS that I read daily on the thyroid forum boggles the mind.
We have lots of members who are clearly undermedicated or wrongly medicated struggling with obvious hypothyroid symptoms who are told they are imagining it, they are stressed, anxious, menopausal, depressed or just plain crazy.
If your blood tests are anywhere in the range then you must be fine and clearly have a MH issue. We have members frequently fobbed off with ME/ CFS diagnosis, when my understanding is there needs to be a process of elimination before this is decided.
I'm afraid medical ignorance and gaslighting isnt just confined to FND but is endemic across the board. I dont know what is causing it, the way doctors are trained, compassion fatigue, overworked, not enough time to fully examine and diagnose patients, pressure from on high to reduce waiting lists or just plain old arrogance.
Rather than admit they dont know what's wrong they'll tell patients they have ME or FND because they can blame everything on that, there are very few treatment options and it gets you out of the door. I have an extremely low opinion of most of the medical profession now, can you tell?
I think they did in the olden days. I was chatting to a lady the other day who had been with her surgery 60 years (if I remember correctly) and they seemed to be managing her medical care, regular check ins etc, a rareity these days
The crazy thing is if that if people had check ins regularly, things could be caught (diagnosed earlier) and treated earlier preventing certain diseases and conditions.
A tad. I am guessing its a combination of all the above but they need to students passionate about conditions like FND, apparently a "rare" condition, we all know thats not true.
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Final episode of the FND podcasts
FND, POTS and non-epileptic seizures
Alternatives to FND diagnosis - maybe helpful???
FND Treatment
FND diagnosis and if you've been given help.
