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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Long term health conditions

1 reply

User154871 · 19/06/2023 20:04

I know IABU. I'm ill with an skin immuno condition and I'm having a flare. It's severely affecting me and I've had to drop out of a social commitment due to it as well as working from home. I've been on so many treatments in the last fifteen years that I'm exhausted by it - none of the available options are working currently and I have to wait for my next appointment for them to increase the dose and in the meantime the symptoms are actually getting worse.

Another person I know has been ill with a serious condition. They've been really vocal about their treatment process and illness with the rest of the group (with lots of messages of sympathy and support), had an operation and posted an update today that they have been told the surgery fixed the condition and they are now fine. I'm relieved they are fine now, obviously.

But part of me is so ridiculously jealous. Not of their illness - I know they will have been going through hell, but of the potential to have it 'get better for good'. I keep getting people come up to me and say, 'you look better' or similar which is incredibly awkward given I'm worse but I don't usually make a fuss as it's long term and I don't know where to start with, 'I'm ill for the foreseeable'. It's so depressing.

People generally don't get the concept of the 'long term chronic conditions' version of disabled that isn't visible most of the time. They have a massive impact on the ability to work full time and still have regular hospital appointments, drug changes, wash-out periods in between, flares and side effects. My treatment options are extremely limited because we want another baby. Two of my doctors asked me if I'd considered 'not having a second child'.

Just really frustrated at being in this boat and would really appreciate anyone else's experiences. I wish there was more awareness of long term health conditions and their impact!

OP posts:
mynameiscalypso · 19/06/2023 20:09

I get it (is it psoriasis? I'm just coming out of a major flare too if it is). I think it's hard for people to have sympathy for something that's chronic vs something that's acute, at least beyond the short term. When it's years of always being just a little bit worse or a little bit better, nobody can be that interested. I've tried to make my peace with it but I agree it's shit and makes you feel very lonely and isolated.

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