What do you wish people understood about chronic illness?

[WhiteRosesAndCandles]

I live with health conditions that have negatively impacted my daily life for more than 20 years and am not going to get better.

Medication protocols are restrictive. I have constant, moderate pain and this causes significant problems with quantity and quality of my sleep.

Some days are better than others. I know there will be bad days. I don't look ill, I am never 100%.

It is exhausting to constantly explain what I am not able to do and why I need to manage my life around medication and appointments.

It is not for me to say what the quality of life is for other people.

Just because I am younger does not mean I am in better health.

Yes X is still a problem. It was yesterday and will always be. I don't complain, it will never get better.

Sometimes I just can't, it isn't personal.

That taking bloody vitamins won’t make a difference!Just how much pain I’m in every day in varying degrees even though I do work.The fatigue is just simply awful and that’s how it is forever more

That I'm not lazy, I don't need to do more exercise and I don't need to just push through.

That when you cancel at the last minute it’s because you HAVE to, you’re not being rude and you really would love to be there….. and that just because you’re up and out the next day still doesn’t mean you had a choice about cancelling them yesterday.

sadly my last set of friends stopped inviting me when I cancelled going to an informal afternoon tea party when we bumped into them the next afternoon at a local town folk festival. Yes, I had a bad bad migraine yesterday, yes I have been resting assiduously until half an hour ago wondering if I felt up to coming to this…….
Everyone else I know had stopped me to anything, and this family stopped after that.

DH doesn’t want to go anywhere anyway, but I can’t cope with hosting otherwise I’d do that.

The

Your first paragraph reminded me of when someone said to me "your son doesn't look autistic" 🤔 🙄

Glad you sat outside a bit on Saturday ...

Exactly, I got this when we had a few weekends away....

That just getting the crumbs that fall off the table as disability provision is really shit.

Knowing that they don't think it's a priority to get it sorted when things go wrong with equipment that allows access is really shit.

Not being able to access the service at all because equipment is broken/crap until it is mended/replaced is really shit.

Being a problem they have to solve (or not) or spend time and resources thinking about rather than a human is shit.

Disability access being an after thought.

Wanging on about everyone flourishing/thriving/reaching full potential when you are in their system barely scraping by and they won't even do the little stuff that is free.

That I might meet friends at lunchtime and bounce into the restaurant and chat away. Cue lots of "it's lovely to see you looking so well". But by the end of the meal I will feel my face muscles awakening from talking. And by the late afternoon I will be lying down because I cant hold my head up

That changing my diet or being 'positive' isn't suddenly going to cure me,or make me feel much better. Or taking this or that supplement will make a huge difference. I find people who say these things to me incredibly annoying. Do they really think that having had my health conditions for 30 years,I haven't already tried these things? It is incredibly patronising.

I had this when I first developed rheumatoid arthritis (when I was 30). I had many people saying to me 'You're too young to have arthritis'. Really? Children as young as 6 months old can develop it.

That was meant to say "weakening" not "awakening"

That I may look ok and frequently get comments to that effect however im constantly exhausted and one busy day often means 2 days in bed to recover.

21 years post kidney transplant
Cancer and sepsis survivor
Bowel and bladder problems
Arthritis
High BP
High Cholesterol
AF
Immunosuppressed