If you have been chronically ill or disabled since childhood, how has it affected your adult life?

[Ponderin]

I have had type 1 diabetes since pre teen so a pretty long time for me now I'm almost 40. I think what I noticed was energy levels significantly less than my peers from probably mid twenties. Then complications starting to rear their ugly heads, which thankfully I am able to the slow progress of with modern technology.

Some days are still tough with blood sugar dropping really fast and out of the blue with no discernible reason. To be honest, I have no idea how I didn't die from a massive hypo when I was much younger with no continuous glucose monitor to alert me once it starts to drop. I have been insanely frigging lucky! The monitor now allows me to treat before hitting a hypo, so I don't hypo very often. It is an absolute godsend and again I'm lucky to have it, not everyone does.

Apparently about 40% of type 1 diabetics have fatigue and I'm definitely one of those people. I'd say that is my biggest bugbear, alongside the actual management of it. It slows me down considerably.

For those of you who have had a chronic illness or disability since you were young, what are the biggest effects on your life? What have been the hardest parts?

Are you doing well now?

i've had chronic pain/spinal issues since i was 16.

I think the biggest impact has been constantly trying to assess if i can put up with the pain, or how long i have before the pain kicks in to a point of being unbearable whenever i've wanted to go and do anything... the constant need to consider stuff like... will there be somewhere to sit? How far away is the carpark? If i take public transport will i get a seat (standing on trains is a major no)
And then having to factor in recovery time afterwards.

Last spontaneous jaunt has taken me nearly 2 weeks to recover from...

I'd love to go do stuff without having to think about the practicalities of managing my broken body first :/

I'd love to go do stuff without having to think about the practicalities of managing my broken body first

Yes, I hear you! So much this. The planning and constant negotiations to make those plans work, thinking of the ways to get around something to make it doable, that takes a big chunk of mental energy.

CFS - It has completely ruined my life, tbh. I'm nothing like those my age (30 this year). I feel behind and there's so much I haven't yet experienced, which I find really embarrassing. Mentally, a part of me is stuck at 13 (when I fell ill). I've tried to help myself over the years, of course, but I have had a couple of relapses, so I'm still in the same situation, and I'm petrified this condition will take my 30s, like it has my teens and 20s. I used to be a very active person :(

I’ve been disabled since birth and also developed multiple chronic health conditions over time. I’ve now deteriorated to the point I can’t walk at all (mid-30s). Big issues are the constant pain and exhaustion, and being dependent on others for simple tasks. But frankly I find the worst thing about chronic conditions is how much people expect you to just cope and get on with things, and how that gets in your head so that you feel you should be able to. If ‘normal’ people were in so much pain and so tired they would just go to bed or lie on the couch for a week, but when that’s your constant reality you have to push through so much. No I can’t work and no I don’t go out, but I still push really hard each day to do as much as - and more than! - I can, and I find it hard when that’s taken for granted or worse looked down on.