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Chronic pain

Fed up with peoples judgements

5 replies

denpark · 11/09/2022 13:44

I have fibromyalgia which I keep mostly under control with daily medication. However, there's obviously flare ups and if I do too much then I suffer then next day or two.

I went out the other night (I was having good pain level evening) and got really pissed off by stupid comments eluding to how I 'couldn't be that bad' as I was out.

The next day I could barely move off the sofa (I was expecting that and had planned for a painful day).

Why don't people understand that just because we look ok on the outside for a few hours doesn't mean that we're fine.

OP posts:
Pixiedust1234 · 11/09/2022 13:49

People don't understand fluctuating conditions. You are either bad or not. They also say you can't be ill because you look well 🙄

Keep emphasing that you are having a flare up, not that you feel well enough. Flare ups signify fluctuations, feeling well enough implies that you can't be that bad. Its all about choosing the right words.

Its something I have only just learnt after 20yrs. Its changed how family treat me.

denpark · 11/09/2022 15:39

Thank you so much for your comment. I'll try to adjust my language and see what impact it has. It's so frustrating. I went out for a day with family recently and I really was feeling awful. They just didn't understand as I'd been 'ok' the day before. The day before I'd taken my children to a theme park abs I was exhausted beyond measure.

OP posts:
picklemewalnuts · 11/09/2022 15:46

I use phrases like 'I'm really enjoying myself! I hope I don't pay for it tomorrow!'

I mention having rested the day before so I'll probably be able to manage.

It's saying out loud some of the internal management that's a normal part of life for us, now.

Things like 'I'd better not climb the tower, you'd have to carry me home!'

I try not to sound like a martyr, use humour and so on.

The fact is, we constantly pace ourselves to manage as well as we do. Best to admit it.

I'm having a low week at the moment. I think I know why, though I'm not really certain. It sucks.

BCBird · 11/09/2022 15:52

I totally get what you mean. I have been recently diagnosed with fibromyalgia, fir years I was told it was probably lupus. When I feel.unwell often people can't tell, apart close friends. If we had a visible injury people would undoubtedly be more understanding.
Stay strong.

Pixiedust1234 · 11/09/2022 17:09

Ahhh those famous days out. I know them well 😂

First prep your husband. If we go then I need you to do extras. If he agrees then whoohoo!!! These are some:

You sit at table while he goes to the cafe for drinks.
You sit on beach while he gets ice creams or takes kids to paddle
You sit on bench and watch them climb a hill or run to next zoo enclosure
You stay near a road while he fetches car from car park (extreme measure only, try to avoid)
No cooking that day, either dh cooks, takeaway or pizza and fruit night
He puts the kids to bed
You might not be able to do much the next day but fingers crossed you can (in bright cheery voice)

Obviously if you are feeling fine then you join in more but if they are aware you will be pacing during the day then there will be less room for disappointment.

I have found a walking stick helps. It makes me less tired as I'm not wobbling everywhere. Mines a snazzy sparkly purple one Grin

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