To feel like this - chronic illness

[Orangeblossom78]

I have a condition which when it flares up has around a 15-30% mortality rate, needs urgent surgery, leads to sepsis etc

Have found family and friends don't seem to understand it, which seems quite common when speaking to others with the same thing

But now people are totally anxious about the situation at present - in a way I feel like 'well, there you go, that is how it feels for me all the time. The unpredictability, the uncertainty, the stress and worry.

I have a lot of friends in your position and I am thinking of them a lot. They are all so stoical and have dealt with many years of isolation and stress and been forgotten.

I am hoping society will be much more compassionate after this and remember them

You are all heroes Stay safe over the next few weeks

YANBU. I feel really mean for having these thoughts though.

It gets things in perspective a little bit. Don't worry about feeling 'mean' ShowYourself, things are not easy at times. It doesn't mean wishing things on others, it is just a kind of recognition that maybe sometime people need to experience something themselves to understand it perhaps.

It is interesting observing people who dismissed me in the past in a flurry about this recent situation however.

I mean people like me have this on top of our usual worries to deal with also, we are also worried as well. But maybe being used to such worries gives a bit of resilience and acceptance in a way.

maybe being used to such worries gives a bit of resilience and acceptance in a way

I think so. Take all the initial advice we had on handwashing and using tissues. This is what those with illnesses have done for years, it's nothing out of the ordinary. We already know to stay away from others if we feel ill or if they do. Our prescriptions have been on auto-order for years. Yes, us invalids are well and truly ahead of the game!

I hear you.
They’re now living with what we deal with every living minute of our waking day. But over time sadly and disappointingly, they WILL forget.

For us it’s a constant way of life, for us, this IS the norm. We can’t afford to get poorlier than we already are.

I always say it isn’t the condition that’s hard, it’s explaining the symptoms and way of life to people that is the real battle xx

im in this situation too. Everyone is going on about how hard self isolating is, Ive been self isolating for years. Except people with chronic illness can't do all the stuff that normal people can do in self isolation - exercise, cook, fun stuff. Sometimes I just need to lie down most of the day. I agree it is explaining the symptoms that is the tricky bit. I hope it does lead to people being more compassionate.

Yes, another thing, quite a few with ongoing stuff have been told by our consultants "Sorry but there isn't much we can do, you are going to have top just learn to live with it" whereas for most, this virus would just last a couple of weeks, and there is a vaccine (possibly an end) in sight, which is good.