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?

@birdandroses All my own work I'm afraid. We've had no advice from doctors and were indeed offered GET. But we were lucky that there was enough information out there to warn us against it and I'm resourceful enough to look into why it could be wrong for her.

I don't have a lot of hope for the prognosis for ME patients in general though. There's enough evidence now that regularly pushing too far is damaging long-term, yet I still see people with ME ignoring this and living day to day or week to week. It does make me think that even if we got to a place where doctors advised rest and pacing, some folk would still ignore it.

@BonnesVacances I am not surprised to hear you arranged a 2 day CPET yourself as our medical profession have not been told about it here in the UK. The US team, the Workwell Foundation, who discovered it as a way to show energy production problems in people with ME are trying to educate other doctors but plenty of US patients are not told about it still. Of course, some people are too severe to do a 2 day CPET test.

As you know here in the UK there is little to none and often incorrect help/advice from the medical profession on ME . I think it would help tremendously if the medical profession were trained to know about the aerobic metabolism dysfunction in ME including CPET testing. Too many still think it’s not an organic illness or don’t know the physical harm of regularly pushing beyond one’s limits.

If ME patients were told by the medical profession that regularly pushing beyond their individual energy envelope is damaging long-term and why, backed up with CPET results, I think more would be able to follow a good pacing program. They would also have the medical support to make changes. In fact, a friend asked if I would speak to someone newly diagnosed. She is still mild and trying to work and exercise even though she is getting more ill. I sent her all the US Workwell foundation info on CPET testing and aerobic metabolism dysfunction including some new videos they have just put together. She was shocked and said she finally realised she needed to make big changes. Her doctor had given her zero advice. Her husband and work hadn’t been supportive, thinking she could do more, but she was going to get him to look at the info. To pace well you need support from those close to you.

At the moment the vast majority of medical professionals aren’t telling ME patients any of this, often the opposite and advised to exercise which for a person with ME is like a doctor telling a diabetic to eat more sugar! Also pacing isn’t a guarantee of stopping deterioration, although it increases ones chances considerably not to deteriorate, especially if told at the start. I paced and it didn’t stop me becoming severe. Of course there will always be a few people in any population who don’t follow advice, but the terrible thing is that advice isn’t being given.

Above all we need more biomedical research and treatments developed so the next generation might not end up like me, ill for 21 years, bedridden for the last 6, nine years since I could leave my home. There are many like me and worse.