Psychologically Recovering From Chronic lllness - experiences welcome

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Hi there… just feeling a bit alone in my situation at the moment and wanted to share my feelings and hear how others in a similar situation have managed.

I’m in my early 20s now, but aged 11 I became unwell with a rare endocrine condition. I rapidly became very disabled, felt absolutely awful most of the time, couldn’t go to school and needed almost full-time care – not to mention the restrictions it put on my lifestyle generally. I was misdiagnosed, so didn’t really get any treatment and after being ill so long I wasn’t expected to recover. However at the beginning of last year (after four years of trying) I managed to get some medication on a personal hunch about what might be wrong with me. Within 48 hours of starting the drugs I was transformed. I’m not ‘cured’, but the medication means my condition is now something I can live with and I actually have a decent quality of life again.

I’m pretty happy now, the trouble is that I’m very worried something else will come along/my condition will deteriorate again and stop me doing the things I’ve grown to love. This is not unjustified, very little is known about my condition (it doesn’t even have a name) and my drug regime already takes its toll. That said, I know worrying will not do anything to help and I want to make the most of being well. Most of the time I just go about my life without thinking about it too much, but now and then I’ll have a few days when something triggers my anxiety and I just get distraught thinking of all the things I won’t be able to do anymore if I get ill again.  I’m not scared of illness itself, just its impact on my lifestyle and happiness.

The other problem I’ve been left with is that I coped with being so ill for so long by greatly reducing my expectations of life – as far as I was concerned things like work, relationships, education, holidays, sport etc were just not going to happen and eventually I accepted that and felt better for that acceptance. Now ‘wanting’ anything of that ilk just seems absolutely terrifying and when I do allow myself to ‘want’ something I worry about all the things that could potentially prevent it happening. For example in three weeks, I’m going away for the weekend to a national sports training camp thing, it’s a great opportunity and will be the first time I’ve stayed over anywhere outside the county since before I got ill. At first I was really excited and looking forward to it, but on realising how much I ‘want’ to go, this has turned into a fear that I’ll get injured/pick up a nasty bug and won’t be able to do it after all.

Note that, whatever happens, I won’t let my anxiety stop me doing the camp, and these problems aren’t taking over my life, but they do stop me being as relaxed and happy as I might otherwise be. I’ve had, and still have a bit, of counselling for this issue – but don’t feel I’m making much more progress on it. Is this something, like grieving, that I just need to give time? I was ill for nearly 10 years after all (on top of years of abuse and bullying previous to this) and have only been well again for just over 18 months, maybe it would be daft to expect to feel completely fine about the situation in such a short period of time. I just want to feel like a survivor and not a victim.

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  • Posted

    I'm also recovering from a chronic 'invisible' illness. Previously thought to be endocrine, but now I've been diagnosed properly, it's actually cardiac and immunological. I'm still anxious about it, I'll have these cardiac symptoms for the rest of my life and I'm trying to learn to go out and enjoy myself again! 
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  • Posted


    I haven't been though a serious illness but I just wanted to say that you need to give yourself time to build up some good memories.  It's only natural that you have negative thoughts as most of your references are of not being able to do things, so being able to do them must seem quite unreal.  I suffer from anxiety issues and even though I'm getting better there are still some things that I can't imagine being able to do, but I'm doing more and more and learning not to listen to those negative thoughts.

    Have fun on your weekend away and you'll soon start to realise that the good things are real, and that you can do them, until one day you won't even think about it biggrin

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    • Posted

      I think you have a point there, as in particular the things I'm worried about in regards to the training weekend are quite obviously related to issues I had in the past.  In particular I'm worried about catching a cold, something I used to have a real phobia about because they'd make me so ill (it would take months to recover from them, and mere sniffles for other family members could leave me hallucinating from fever). I thought I was mostly over that as I got loads of colds in the first few months after starting medication (probably because I started going out much more again) and realised they weren't that big a deal anymore, but I think there's still part of my subconscious that sees them as a major disaster. The more 'normal' experiences I have, the easier it gets to imagine things actually being ok in future.
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  • Posted

     hope you go from strength to strength, my problem is withdrawing from pregabalin, plus I also have M.E. and I think this has crept up on me,   all the best, rosie.
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