Invisibility Illness Bingo!

[quirkytizzy]

How many have you guys had others try on you?

[AnnNY]

Was with my family at Christmas. I got a lot of these. One brother was telling me I was too fat. I said, "Yes a med I took caused me to gain weight (gabapentin and prednisone). Sneer. And he is a therapist!. I joked with my sister in law that I'd be in bed for three weeks after I got home. "Well, why don't you just get up." "Because if I don't let my body recover, I'll get sicker." And of course, "You look healthy." "Yes, people with lupus get told that a lot. It drives them nuts!"

I was in Colorado, and I did give the high CBD marijauna a shot. It did seem to help with my neuropathic pain! Drove my sister-in-law up the wall, even though I had discussed the whole thing with my nurses and doctor.

Oh, well!

[Sara_A]

I said to my partner yesterday that when I'd gone to collect my bupronorphine patches from the pharmacy I have for pain that I felt they looked at me a bit like 'why do u need these u seem to look ok'

Yes it's because I'm wearing a 10mg bupronorphine patch that I do look 'ok'. Before this I was not ok!

I had my toddler and baby with me in pushchair so I think they just look and think I must be ok!

Plus they only see me on a 'good' day , that I can actually get out. They didn't see me struggling getting the kids and pushchair out the car and all the bits beforehand!

I feel these patches have really helped with my everyday life and that I can actually get a couple of things done each day like wash up and iron etc nothing too extravagant! Ha

[Shaysuekirk]

I've had most of these for sure!! especially the well-intended - try exercise, go for a walk, try essential oils, you just sleep too much, that's why you get insomnia... on and on.

Mostly, I do think most people want to help, none of them understand and it's also extremely difficult to define PAIN.

[field]

My rheumatologist has told me on a few occasions that i look well, even after i have told him i feel rotten. If even he doesnt get it, there is no hope in hell that anyone else wil.

[Lupiknits]

Oh yes, I've had one ot two, like " you"ll feel so much better if you go and sit in the sun for a bit". My one great advantage (well, in terms of proferred and unwanted advice) is that I look very ill, even on good days. That brings on the mutterings about eating disorders, though. A good friend overheard this and announced very loudly exactly what my problems were.

[happytulip]

"Oh my gosh, you look SO well"

My response: yes, that's the 18 meds I take every morning, especially the high dose steroids to keep my heart and lungs from becoming so inflamed that I can't breathe. (Big smile with steroid cheeks).

It may be blunt but it stops them in their tracks.

[Loopydroopy]

I had everyone in my family and close friends read "The Spoon theory" you can google it. It's pretty spot on. My doctor told me about it.

[SLEEPINGDOG]

JUST ABOUT ALL OF THEM OVER THE LAST 15 YEARS, QUIRKYTIZZY, PLUS THE OLD REGULARS:- Now YOU know what it feels like! I've been suffering from these symptoms for years, but you haven't taken it on board because I never complain about it and the 30 pills you take every day are NOTHING compared with mine, which are stronger. Just stop complaining and get used to it . . . . . .As for avoiding people in an attempt to sidestep infection "you are just being antisocial! - You'll regret it later when you lose all your friends"

Also - because I am about ten pounds overweight according to my body-mass-Index, I get "If you lose some weight, take more exercise / and get some fresh air etc . . . . [difficult when your legs will only carry you about 80 yds, due to pre-existing conditions] and another one you mention "How can you look so well and pretend you feel rough?"

As you all know - with Lupus - some people do lose weight, giving their faces a drawn wolf-like appearance but not me [sadly].

[creaky]

Yes I got two in one week once, both from ex work 'friends'

"your so lucky that you don't have to work any more. "

" you look great, retirement must really agree with you. "

I also have close friends who just quietly change their plans, so that I can keep up with them.

Say they fancy salad/sushi for lunch, because they know I'm trying to stick to a diet.

Go shopping with me and spend more time and money on cups of coffee then anything else.

These days I just try to surround myself with people who get it, so we don't even have to discuss it, and the rest can take a hike.

When all else fails I know that people here understand, and make me feel human again.

[Buffy14]

I once had a GP say to me " I don't see you as being disabled " isn't lupus a disability ?

[Hnewman2]

love this post! I've had the following:

- ''just deal with it/get over it''

- ''you're making yourself sick because you are thinking about it/researching etc...''

- '' you just need to exercise/eat healthily'' (may I add im not over or under weight at all)

- when telling a family member my diagnosis I had ''thank god it's not something serious''..

and of course the old ''i knew someone who had that... he/she is fine now''.