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?

thanks MonicaGB, I will respond properly tmrw.

What did the post actually say ?
I can see where you are coming from but maybe the way you have worded it some people may take offense to it.
I'm not sure if this is the way you mean it.
I have fibromyalgia and have looked into alot and I think where you get the "it all in the head"from is that, that is where the fibromyalgia comes from. It's to do with brain signals and what not. So your not actually saying it's all in our head as we are making it up ,it's just where it comes from to begin with etc.
As for the mental health side of it, fibromyalgia causes depression because of the side effects from it. And some say that people that have had a traumatic experience due to extreme stress is the main reason people develope fibromyalgia. So in a way mental stresses can be the cause of it and I think alot of people who have fibromyalgia do have a mental illnesses also.
Plus reading an article the other day they have found people with fibromyalgia have less seratonin which of course is what people with some mental illnesses have less of which is why SSRIs help with depression which is also why most people like myself with fibromyalgia take SSRIs.

If they found it offensive then that's how they feel. But they didn't need to send messages with bad language to you. They could of explained why they feel the way they do about the post and ask if you could please take it down.

Those who get ME as a teenager and are given the correct advice to rest and pace at the start and not fo graded exercise have the highest chance of making full recoveries

Thank you so much birds

Gosh i feel like crying and thats not like me

Having said that dd won’t bloody rest

@birds and roses

@manicinsomniac, I know you are basing your comment in reference to fibromyalgia, but as someone with ME I have often seen the accusation that when people with ME say they do not have a mental health condition they are belittling mental health conditions. I just want to make it clear this is not what a person with ME is saying when they state their illness is physical and I imagine it it could be the same for people with fibro

Yes, sorry. Of course many people with all these types of conditions are distinguishing not belittling. But the person who I quoted actually wrote, in their own words that they would find it belittling to have their fibro called a mental health problem. So I totally agree with you that not everyone thinks that way - but some evidently do.

And I also don't think it can be said to be a 'sweeping statement' that everyone I've met with fibro also has MH problems - it's just a fact. Of course I haven't met everyone and of course there will be some who don't. But my experience of it is 5/5 have both and that seemed to be backed up by most fibro sufferers on this thread saying they also have MH problems. That could be just coincidence as both things are fairly common. It could mean that there is a link between fibro causing MH problems. It could mean that there is a link between MH problems causing fibro. Who knows. But it's all illness and neither one is more important than the other.

Dd didnt have MH problems until she got ME

Both her mental heath issues are ‘trauma’ related

I say both, I suppose its 3

That's really interesting, Rufus - trauma is also listed as one possible cause of ME too.

Not meaning to say that it's interesting that your daughter struggles with her health that is! Just interesting that there are so many links between physical and mental illnesses.

I understand what you mean maniac

But the traumatic event was getting ME in her case

I refuse to read more than the first few posts on the first page.

Whoever made that meme in the first place should be ASHAMED of themselves for not thinking and fact checking first.

My neurological conditions (Inc fibromyalgia) are NOT mental health conditions.

There was also research recently which shows it's more than "something in the head". I'm too irate to bother looking for it.

Ah, I see.

The creator of the original image isn't responsible for OP's Facebook post. Anyone can say anything they like but the OP chose to post it without reading it properly.

If you post things you don't read, you risk saying something you don't necessarily mean, and you risk inadvertently upsetting people.

My daughters friend has ME, she was a very talented dancer who never recovered from Glandular Fever. She was advised by doctors at her local ME clinic that if she really wanted to get well then she needed to exercise more and if she changed her attitude and stopped thinking she was ill then she would recover. She followed their instructions to the letter but sadly she didn't get over it, as we were all expecting her to. She is now very, very ill and bedbound in a dark room as she can't tolerate light, she can no longer swallow and has to be tube fed. It's heartbreaking, my daughter says people don't realise just how serious the illness is for some as it always seems to be reported as a trivial condition in the media.

I was also shocked when she told me that anyone with a diagnosis of ME/CFS is permanently barred from donating blood.

The parents of my daughters friend were delighted to read of this event taking place not too far from where they will be visiting in a couple of weeks and they plan to attend.
www.eventbrite.com/e/an-update-on-research-and-treatment-of-myalgic-encephalomyelitis-me-registration-74800188377

You just don’t understand the difference between mental illness and neurological condition. I get why they’re angry. These sorts of ill-informed posts are so annoying. Nevertheless, their extreme offence suggest we have a long way to go to remove the stigma around mental health issues.

I’m on the fence. I think, as you probably realise, the post was hurtful but they didn’t need to send a nasty message. They could have been blunt but polite and to the be point without swearing, given that you also have fibromyalgia.

@manicinsomniac You are right that person you quoted did say they would find it belittling to have their fibro framed as a mental health condition and I would agree that is a bad statement as it implies mental health conditions are not serious which is very wrong. I think a problem perhaps is people with fibro and ME have often been told by the medical profession they are suffering from hypochondria and have nothing essentially wrong with them. So they are not even being treated as someone with a disabling mental health condition such as clinical depression, crippling anxiety or bpd, but as said are being treated as having essentially nothing wrong with them, or something that a bit of exercise and a more positive mood would sort out.

This of course is devastating when very ill and you know these things will not help and in case of exercise for people with ME makes them worse. This means some patients with these illnesses may make unhelpful and irresponsible statements that describing their condition as a mental health condition is belittling. What they probably mean is it is belittling to have a life changing illness treated as something that can be made much better, even fully cured, with a few weeks talking therapy and some walks in the fresh air.

You mention that with fibro it may be there is a link between fibro causing MH problems or it could mean that there is a link between MH problems causing fibro and it is not possible to say which. Again I believe fibro like ME has though been mainly approached as being caused by the latter - that MH problems cause fibro and not the other way round. Despite claims by med practitioners who promote this psychosocial based model of fibro and ME that psych based treatments are effective, if you dig into the data and patient testimony, patients with these conditions are reporting they are not getting better with mental health based treatments such as talking therapy and anti depressants. Meanwhile scant money is given to biomedical research which may develop effective medical treatments and improve quality of life. I absolutely agree with you that it's all illness and none are more important than the other. However, as a poster said back on page one it matters from a treatment protocol point of view how these illnesses are defined as inaccurate information is harmful.

Finally, people with ME and fibro now are being told by some in the medical profession - such as poster xxyy376 who says they are a HCP - that their illnesses are Functional Neurological Disorders. FND is based on the premise - as confirmed by xxyy376 - that FND is caused by emotional problems manifesting as physical symptoms. FND is just a new more medical sounding term for what used to be described by Freud as hysteria. I would argue the theory behind hysteria was bunkum then and remains so today. Sadly, some patients don’t realise what a FND diagnosis actually means. Once again the treatments for ‘FND’ are talking therapy and anti depressants (plus encouragement to be more active) which do not work for people with ME and I expect nor fibro, though I believe some exercise can help manage fibro pain to an extent.

Ps and I should add that I acknowledge long term physical illness can not surprisingly affect mental health. I have been too ill to leave my bed now for six years, it would be surprising if this doesn’t have an affect on my mental health. The sad thing is many ME patients darent get help for any mental health problems caused by the physical illness as fear all their physical symptoms will be all wrongly framed as being due to poor mental health.

Rufusthebewildereindeer, monicaGB and antwacky, i’d like to respond to your comments later today. Couldn’t sleep and wrote the above to maniacinsomniac.

They could have been more pleasant about it, but the stigma surrounding fibromyalgia being a mental health issue and not a medical one is still widely perceived- although new research is positive in regards to their being physical characteristics and causes. To have it in with other mental health complaints- I can see their point as it again puts it in the mental health, not medical category. Counter could also be argued that given some MH issues are resultant from brain changes/ differences though, and chemical imbalances they are also more medical.

The thing is @manicinsomniac, speaking just for me, there is a difference between my mental and physical health and as far as fibromyalgia goes I’m happy to keep that demarcation. As I’ve said upthread, my mental health issues are fairly well managed at the moment with my medications. My fibromyalgia isn’t even remotely well managed. I’ve tried so many meds over the last 8 years and I’d like to think if it was purely a mental health issue I would have happened upon the right combination to control it. Amytriptyline is a favourite one to push at patients; an anti-depressant that has the happy side effect of pain relief and sleep aid. Shame it does nothing except turn me into a zombie.

Those who get ME as a teenager and are given the correct advice to rest and pace at the start and not fo graded exercise have the highest chance of making full recoveries.

100% agree with this. DD was 14 when she got ME. We withdrew her from school and she has painstakingly rested and paced for nearly 4 years. Her recovery has been slow but gradual. She's gone from having all her meals in bed to now being able to reliably leave the house 3 times a week. In the last few months we've seen a big improvement in her capacity and are even beginning to hope that she might be well enough next year to start an Access to HE course and fast track to uni.

She did the 2-day CPET a couple of years ago which showed the effect of exercise on her energy system. It gave us faith that resting and pacing was the key to her recovery and that helped us find the patience (& hope!) we needed. I'd really recommend googling it as the understanding we gained about what she was battling with physically was invaluable.

@birdsandroses - Thank you for that detailed and informative response. I agree about the importance of correct diagnosis and I had no idea what the implications of an FND were. I'm sorry you've been so ill for so long. That's awful.

@MonicaGB, thank you for your kind words. I understand your fear of your ME getting worse. As I’m sure you know the most important thing is to live within your energy envelope as much as possible. I appreciate this is not as easy as it sounds, especially if you are just about managing to work, it must be very hard. Pacing will not guarantee you will not get worse, but if you do continuously push beyond your physical and mental energy limits your risk of deteriorating further is much higher. I wish you all the best.

@RufusthebewiIderedreindeer, I am glad me sharing young people have a better prognosis if they are not made to do too much at the start has given you hope for your daughter. I am sorry she has this illness. All the best for the future. I hope she gets better at pacing, it’s not easy.

@antwacky, I am so sorry to hear about your friend’s daughter. The symptoms of very severe ME are awful, a living hell. It’s also so wrong that many of the medical profession are still recommending graded exercise to people with ME which can make people with this illness much worse long term. I truly hope your friend’s daughter can improve eventually.

@bonnesvacances, I am so glad your daughter was not given poor advice at the beginning to push beyond her limited energy envelope and with careful pacing she is improving. I know not many doctors know about the 2 day CPET test in the UK so I am glad she managed to do it at the start of her illness and this showed her aerobic metabolism dysfunction which helped her to realise the importance of pacing carefully. I wish your daughter all the best.

@maniacinsomniac, thank you for your kind reply. I am glad my info was helpful.

Finally, I wrote in a previous comment the few studies looking at prognosis suggest if full recovery is going to happen it’s most likely to happen in the first few years of treatment. I didn’t mean to write the word treatment, there are sadly no biomedical treatments for ME yet. Patients can only try to manage their illness by pacing, balancing rest with activity which is of some help but limited, especially when severe. More biomedical research is desperately needed so biomedical treatments may eventually be developed that if not cure the illness at least give a better quality of life for the majority who do not make full recoveries.

Thank you bird

I may have to chain her to a radiator to make her rest

But I’m glad we’ve never forced her to do stuff and she is learning that what she does one day will have an impact for the next week or two

@Rufusthebewilderedreindeer, ha, could be an idea 😉

I am very glad you did not force her to do stuff

It’s hard to stop activities before the cardinal feature of ME post exertional symptom exacerbation kicks in. I am glad your daughter is learning if she exceeds her individual energy limits she will have less functioning for the subsequent days, so balancing rest with activity is best. Particularly hard when you are young and want to keep up with your friends, family events etc.

As you're somebody who presumably knows what it's like to be in constant pain and exhausted if you really do have it too and aren't just backtracking now people have said YABU and patronising, are you forgetting to make allowances for the lack of filter somebody feeling like that (and has been constantly dismissed with 'take some antidepressants, lose weight and get some exercise', most likely refused painkillers and quite possibly called mental/a malingerer/in it for the benefits by many, many people) can have when they see a saccharine 'be nice to the people who are mentally ill, they're special, I'm special for thinking of them, too' type post?

I don't have Fibro, which is a constant source of relief to me - because, with my PsA diagnosis, I actually get useful treatment, rather than being dismissed or having antidepressants pressed on me every time I had something that is a textbook symptom of PsA. Whilst I'm not pain free by any stretch of the imagination, the treatment I get has improved my health and life dramatically in just under three months.