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2/

"There are so many ways that an #illness or #disability can fluctuate, so many ways that the effects of such can change. But when you do have a #fluctuatingillness or disability, it often comes with many of the same pitfalls of a #hiddendisability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."

#chroniclife #hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll #MEcfs

3/
"There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of #chronicillness or #disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.

So what happens when, the next day, you’re back to using both crutches, or a wheelchair?"

#ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #Disabled

4/
"Disabled people are expected to 1) cope cheerfully and positively accept their role as #disabled person; 2) pull ourselves together, minimizing the effect of #disability on our activities & colleagues; 3) strive to improve our condition & “get well” (if you think this seems diametrically opposed to expectation 1, you’re not the only one); 4) look after yourself with as little support as possible; 5) focus on recovery to return to or maintain employment"

@chronicillness @spoonies @disability

5/

“I thought you were getting better?” can hit like the pointy end of a very sharp sword sometimes. It feels accusatory. Like we’re being accused of not trying hard enough, that not getting better is somehow a personal failing, or even that we’re maybe just pretending that we’re as bad as we are for that imaginary #disabled bonus that many non-disabled people believe to exist."

#chroniclife #hiddenillness #invisibleillness @chronicillness @spoonies #Spoonie #ChronicallyIll #MEcfs #postcovid

7/

"You may have to start cancelling plans, which can leave you feeling flaky and unreliable, especially when those plans were with someone that saw you on a good day recently."

@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

8/

"It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out."

@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

@tomkindlon @chronicillness @spoonies @mecfs @longcovid This! This! This!

I have co-morbidities as I imagine many of us do. So while my heart issues may be responding to treatment my arthritis and my adhd is getting worse. The RLS was always chronic anyway. Anything undiagnosed, unnamed, does not count, is not 'real'. So it sounds as if my complaint is always changing - well, that's true.
It's depressing too. Some people might think I'm malingering and I don't have the spoons to argue anymore