Nasty messages from 'friends' after sharing a condition relating to Mental Health Day

[putheronys]

Yesterday I shared an image on FaceBook about ending the stigma towards mental health, the particular image 'poster' listed quite a few illnesses, depression, BPD, Bipolar.... and it also happened to mention fibromyalgia.

I have two fellow friends that suffer with this condition and both have messaged me this morning, one saying sharing that is beyond the pale, the other suggesting I deleted what I've shared since it makes people think the condition is all in the head.

The thing about the condition is it is somewhat in the head, as it's generally believed by specialist that it's how the brain interprets pain signals, again, a mental impairment really (sorry for my awful wording if that's how it seems).

Anxiety is a mental illness but also has physical side effects, such as breathlessness and fatigue, etc.

AIBU to have shared that post? I'm a bit baffled that they'd attack me with way. Am I really in the wrong here?

I think the issue with "mental health" being thought to be "all in your head" is because people think of the "mind" as something ethereal and separate from the brain but contained within it. They think mental health problems are in this intangible "mind" rather than the way the brain is functioning physically.

Most people say the pain clinics they're referred to are crap. And for that patient at that time it is. Because they're not ready to accept that their pain is of a non organic nature.

What a load of utter bullshit.

I had ten years of being told that there was no underlying cause for my pelvic pain - then whoopsie, turns out my extensive endometriosis had been missed. You have no idea what I went through after that first supposedly clear laparoscopy.

I know huge numbers of fibro patients who blatantly actually have hypothyroidism and their blood results would get them diagnosed and treated in other countries, but not here. Years later they get the thyroid treatment they need, when they have barely any thyroid tissue left.

Forgive me for believing that a lack of diagnosis means a lack of underlying health issues.

Stop sharing things you haven't read. It's not a mental health issue, you've mindlessly shared some made up Facebook shit and upset your friends.

One of the issues with Fibromyalgia is although it is a real condition, it is also somewhat diagnostically non-specific, with poorly understood or inconsistent underlying pathology. So it's diagnosed on the basis of clinical examination and history alone.

It becomes, therefore, something of a catch all for many different kinds of underlying problem, leading to unfortunate stigma.

What is interesting is that there seems to be some growing evidence for measurable, underlying differences of various types, in sufferers. But the current diagnosis is so broad that it surely captures non-underlying-pathological fibro in the same bucket - making it harder to conduct research on.

And there is still a huge amount of dispute about classifying it as a disease at all - some believe it is better understood as a physiological response to long-term stress.

So...it's complicated.

@RaymondStopThat which one is that? None of the ones I know are?

Well Guys, UCLH, Addenbrookes to start with. I'm sure you'll be able to find others if you use google chronic pain clinics. Consultants in pain management often come from an anaesthetic background.

The symptoms of fibromyalgia overlap massively with many extremely rare autoimmune diseases.

These have notoriously protean presentations and most consultants statistically will not encounter them in their career and are therefore unlikely to make the diagnosis.

For these conditions 'Dr Shopping' is necessary to get a diagnosis. Studies show many patients see multiple specialists often over years before diagnosis. Many are told they are anxious/depressed as they may well be due to being stuck in limbo and ill for so long. It's hard to assert yourself when you are so tired and ill. Women suffer more from being fobbed off and often the specialist who has missed a diagnosis does not get feedback after the eventual diagnosis. Like a bad driver who never crashes, they think they're doing a great job reassuring all the 'depressed' middle aged ladeeez.

I'd place a bet that many people with fibromyalgia do not get properly diagnosed and end up in pain clinic being told they have no organic cause. You only find what you look for.

One example is people who have small fibre nerve diseases where standard nerve testing is normal but biopsy can show abnormalities.

@PuzzledObserver I’m not remotely “insulted” by having my fibromyalgia miscategorised. My mental health issues are well controlled with medication at the moment. Medication that is well researched and specific to the diagnoses. Miscategorising my fibromyalgia leaves it untreated, that’s all.

Dissimilitude i agree.

@IveGotBillsTheyreMultiplying, it’s interesting you mention autoimmune disorders. I’ve long been convinced that that’s what fibromyalgia will actually one day be proved to be.

Is there maybe something more generally problematic around the fact we divide things up into "mental" vs "physical" health that is the problem? Seems like it's unhelpful. Surely the body and the brain are part of the same system.

Ginger as you probably know, there are many associations with autoimmune disease and fibromyalgia. For example it is more common in people with endometriosis, and it has similarities with polymyalgia.

Surgeons are often more willing to refer to a tertiary centre when they see patients. The system is set up for that. They won't 'have a go' at a liver transplant because they read about it or saw one once.

It's less clear cut with physicians: some will happily 'rule out' or treat conditions when they haven't ever seen rather than refer up to a tertiary centre.

Some of this is to do with lack of resources.

I think even a quick look on the NHS website will tell you that it is related to mental health. One of the treatments is CBT. While I completely understand why your friends are unhappy, it doesn't make it less true.

It is triggered by physically or emotionally stressful events.

I was beat up badly in 2005 and was diagnosed with fibromyalgia within a year. I also suffered a very traumatic childhood.

@IveGotBillsTheyreMultiplying I’ve also got psoriasis which obviously is autoimmune along with endometriosis. Funnily enough, no-ones ever said either of those were in my head.

@Weebitawks thanks for that. Is that your professional opinion? 🙄

It’s a shame that they felt it was an issue, as any physical or mental condition can be very hard to cope with, and there is significant fuzzy overlap. You were not posting something which said fibromyalgia does not have physical effects, you were posting about mental and neurological illnesses, and how we should all have some compassion as these are serious. If I saw migraines listed I would not be annoyed, or autism, both are neurological.

So I do think they knee jerk reacted. You were trying to break down prejudice. And share compassion.

Well everything's all in the head really when you think about it. But not everything is a mental illness.

On a personal note, I imagine it’s very hard having fibromyalgia and other chronic diseases. I think much of the difficulty is that modern medicine is wonderful but it’s weak area is chronic pain, it does not have many good treatments or solutions. I have friends with this who are extremely angry that the NHS isn’t doing enough for them. Unfortunately it’s not the NHSs fault, imho, it is that medical expertise just isn’t their yet.

@Weebitawks you've rather misinterpreted what the NHS page says by leaving out most of it.

@CloudsCanLookLikeSheep I can see the relevance of putting neurological and mental illness together though, they are basically all brain related.

And the intent from the OP was to share awareness of how varied and wide brain related difficulties are to promote less stigma and more compassion. So in balance I do think those who were cross with her were missing the point.

I’m surprised your friends are so annoyed as it’s obviously one of those virtual signalling pass on to your friends guff things which often invade my newsfeed. I know they’ve put no thought into it

@Longlongsummer the point is she wasn’t trying to “break down predjudice” though, because she hadn’t even bothered to read the bloody thing. It was pure virtue signalling with no thought behind it.

The thing about the condition is it is somewhat in the head....... and you wonder why they're offended..... well done for perpetuating that guff (regardless of whether or not you have it yourself).

I have fibro and I'd find that belittling of the condition.

It's hell to live with, and being told it's "all in your head" is upsetting.

My new rheumatologist has decided this too because my joints aren't showing damage (even though I'm on biological therapy to prevent joint damage). He's basically said I need to see a psychologist to learn to live with, and manage, the pain

Pressed post too soon.

I already manage the pain and pace myself else I'd never get out of bed. It was quite insulting to be told he doesn't see this as real.
One of my main problems are typing, cutting veg, etc., anything that involves using my hands.

I suffer a lot of pain in them and they often seize up which I'm sure is down to my rheumatoid arthritis, but because my joints aren't badly damaged, he's concluded it's all in my head and the pain is all due to the fibro.

I left that appt in tears as my pain is real and I felt dismissed.

I have endometriosis as well as rheumatoid arthritis and fibromyalgia. Fibro is a neurological condition, not a psychological issue.