What Not to Say to Someone With Fibromyalgia

Karen Lee Richards has written the top then things never to say to someone with Fibromyalgia here.  Her list, my thoughts.  She has more at the link.

10. We all get more aches and pains as we get older.

My pain started when I was about 10, and hasn’t stopped since I was 15.  I’m not old.  It’s so much more than aches and pains.  An old lady shivered the other day and said she felt the cold.  I agreed I did too.  She glared telling me to wait until I was older.  Right.

9.  I think I have that, too – I’m always tired.

It’s not just tiredness.  It’s crippling fatigue.  I’m lucky in that generally I have a lot more of the pain than the fatigue, and I do take a lot of steps to try and pace myself.  The second I don’t – I’m screwed up for days.  It’s bone aching exhaustion and there’s nothing you can do about it.

8.  My friend has fibromyalgia and still manages to work.  Maybe you just need a job (hobby, etc.) to take your mind off the pain.

I am currently working three days a week.  I work a day, have a day off.  I’m off sick a lot, and am struggling my arse off to carry on, because I just can’t afford not to work.  It doesn’t mean I’m not bad, I just feel at the moment, I don’t really have a choice.

7.  My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnosis.

Utter rubbish.  Sadly a lot of doctors don’t keep up with the research, and still see it as ‘I don’t what else you’ve got so I’ll say you have fibro.’  There is lots of evidence it exists.  At consultant at the local hospital said I had it, but refused to officially diagnose me as it was too “American.”  If by that he means they take it a bit more seriously, then sure.  But the illness is real and debilitating as any other, and has no nationality.

6.  If you got more sleep, you’d feel better.

I do sleep.  I can sleep up to 16 hours sometimes, but other times struggle to sleep four. But no matter how many hours I wake up exhausted, because people with Fibromyalgia do not reach the ‘deep sleep’ stage, the restorative and healing stage.  So the problem is our sleep has no quality to it, it doesn’t really matter how much you get.

5.  I read about this new product that cures fibromyalgia.

Yeah?  How much does it cost?  It’s amazing how many new products come out that totally cure x y and x, but whoops, it costs £1000+.  I’ve heard so, so many therapists tell me they can cure me and then not make the slightest bit of difference.  If a product genuinely works, I find most people want it to reach as many people as possible at a cost they can afford.  Generally.

4.  At least it’s not fatal.  

But it has changed my life.  It took away my ability to walk, to fully enjoy socialising, to work how I wish.  Sometimes during my worst days I do wish it was fatal because it’s hard not to when you’re constantly exhausted and in agonising pain.  I believe conditions like this should be taken just as seriously as fatal ones, because they truly impact every facet of your life and if it was taken seriously hopefully more resources could be put into research.

2.  But you don’t look sick.

That’s because you don’t see me when I wake up almost screaming in pain because some joint is out of place.  You can’t see pain visually, but you can if you pay attention.

1.  It’s all in your head. 

Yeah, something probably has gone wrong in our head like our brain is recognising pain signals far too much, but it’s totally and utterly real.