The Isolation of Chronic Illness
This is a processing post.
I was thinking this morning how long it is since I’ve seen an actual human being. Then began to think back over how many I have seen in the last 10 days – it was less than five. If you take out my family it was two – and one of them was my GP! The other was a faithful friend who ‘gets it’ and knows how much I value contact.
You see, the problem with chronic illness is you can’t go out much. You can’t think ‘I fancy doing’ and go and do it. You can’t meet people for lunch, pop to the pub, go and mooch round the shops, or many other everyday activities – not easily and as a regular occurrence anyway. You don’t reliably have the energy/someone to go with you to make it possible/the resources etc etc… The actual wherewithal to just get out of the house may not be possible. You can’t plan ahead because who knows if you’ll be having a good day or a bad day. And actually once you get somewhere, you can’t stay long anyway! Today, in desperation, I thought perhaps I’ll just take my book to the park to read for a change of scene. But once I thought through if I could make it there, I remembered there probably wouldn’t be a seat comfortable enough for me to sit on. I could take my own, but unless I want to sit in the car park, I’d have to carry it. Hmmm… (and I know I’m lucky in that I can get out for brief excursions sometimes)
If you are ill with, for example, a cold or a broken leg it is for a short time. You feel too ill to see anyone or do anything and when you’re better you’re back up and at ’em; or you can amuse yourself, because after all, we all crave some rest, or have a box-set we’ve been desperate to have time to watch. If you have a chronic illness, that goes on and on. You continually cannot do what you want to.
Another aspect is that if you are, perhaps, in hospital, or ill at home for a time, people come to see you. It is an abnormal event and people come to sympathise and cheer. People cannot continually do that if you are chronically ill. They cannot be expected to. It is not an abnormal event but how life is. Everyone is busy in their own life, they see lots of people day in day out – probably too many, and peace is what is craved. And to be honest, though lovely to see them, sometimes even the effort of someone coming to see you is just too exhausting – it’s a vicious circle.
It’s also difficult to know if someone with chronic illness is ‘more ill than normal’, because you don’t always see them around anyway! So how can anyone know that a situation needs responding to?
All of which adds to an isolated and isolating situation.
I don’t have any answers. I guess I’m just waving a bit of a flag. Does anyone else have any answers or suggestions? I know it must be much worse for others.
Pam's Perambulation 
I do sympathise with that situation. I think some people feel that they don’t like to bother you and so are diffident about calling round unexpectedly. I ask people round for a coffee, I set a time and date with them and explain why I might have to cut the visit short or call it off (tho’ that doesn’t happen all that often) and I am blessed with several friends from church who understand that. And funnily enough, knowing I can do that means I don’t feel the need as often. And, of course, I have my husband here, although he is disabled physically he is still good company so I’m talking rubbish really because it is nothing like as serious as your dilemma. Hugs and prayers x
Thanks. That is a good plan I try to do, though not helped by moving here when already I’ll, so scope to make friends is limited. You’re right – knowing you can call off, usually means you don’t have to.
Your situation is just different – not better or worse 🙂
Thanks for responding and support x
I don’t have any answers except to try and get the best out of each day as it comes. Where we live if Mr I has a good day we are limited in what we can do. I set myself small goals each day but don’t stress if I don’t manage all of them. Apart from hypothyroidism and low energy and depression I don’t have specific medical issues but still struggle sometimes xxx
Yes, it must be even harder if there’s limited things to do even if you can get out. Small tasks do help. Thanks for sharing xx
Yes – I’m really struggling with the social effects of pacing myself. I know from experience that I need a lot of recovery time if I do something that stretches me. Most opportunities to spend time with friends and family involve meeting up outside the home. I have to turn down most of them, and although people say they understand, I worry that they don’t really, and will just start assuming I’m not interested in them any more. It doesn’t help that I can’t really put a name to my condition – I’ve just been left very run down by surgery and heavy duty antibiotic treatment for a severe infection.
What you say is so true Pam, that’s partly why I’ve decided to start talking about it. It is also so much harder when you can’t say ‘Oh I’ve got…’, which is at least shorthand that people get and understand, or look the symptoms up and see what’s happening to you.
Thanks for commenting and sharing in understanding
So identify with this. No handy hints. Just, ‘it really sucks’.
Thanks for the solidarity 🙂
It is so refreshing to read someone writing about illness and not feeling that they have to apologise for their limitations. I think as Christians we must respond with more online resources. It is not ideal by any means but we must foster supportive, non judgemental online Christian communities. We live in a digital age and we must catch up and it is a wonderful opportunity to allow people to connect. It doesn’t replace human contact but we must work from where we are at. I teach NHS pain management courses and the ethos is on goal setting but from a place of manageability and understanding of our limitations and working with them – not against them. Which we often do.
Thanks for your comments. I have decided if we don’t talk about it, how can there be understanding.
There is a fair bit of support goes on on Twitter, but maybe we need something more permanent? Or at least less ad hoc. I’ve been working on christian use of the internet since 1999 – maybe I need to apply it in terms of chronic illness too!
I think understanding our limitations is key. If we don’t understand them we spend too much energy fighting them; and if we don’t understand them, how can we expect others to? I have decided perhaps I need to be brave, take off a few masks and tell it how it is. It’s learning to live with not against.
Thanks again for your helpful insight
Hi Pam,
I’ve thought about similar things – and a doctor friend of mine recommended a textbook on medical sociology (Scambler) which helped me to process. It talks about the “sick role”, which is temporary, and gains certain privileges – being able to miss work, being visited etc, and how chronic illness and disability don’t really fit within that, so people, and society as a whole, find it difficult to process what to do. It also talked about impairment, disability and handicap, and how they’re quite distinct from each other.
If it’s interesting to you, I’ll try and write a review of that chapter on my blog.
For me, it was telling that when a friend was briefly hospitalised, whole carloads of people went to visit him, but I’ve not had any pastoral visits the whole two years I’ve been sick. I’ve had one “get well soon” card, which I cherish. After my friend was out of intensive care/any danger, I was the only person that bothered continuing to visit and text regularly – the others who hadn’t been ill didn’t understand that rehabilitation would be slow, dull, but still isolating. It’s the difference between reactions to chronic and acute illness, I think.
Also, I’m very happy to skype you on Wednesdays and Fridays – they’re my normal housebound days so I tend to lie in bed and speak to nobody. Not that I have much energy, but you could have a few minutes of it, if I’m up to more than crawling to the loo!
I perhaps see one or two people who aren’t work or church related every fortnight, and have to be careful about the sorts of things we do – it’s just not enough contact to sustain all my friendships, so I’ve had to choose only those people that give me energy. But even when I can speak to people, a lot of able-bodied people, even close friends, don’t quite get what this sort of isolation feels like. It’s difficult to imagine, and I often get the “I’d love to spend a whole day in bed” response, when “a day in bed” is not at all the same as “every other day in bed”!
Elizabeth x
There’s a lot of sense in there – thank you.
I’m nine years into this now, and I think time takes it in cycles. I’ve had a tough few weeks, which make the reality hit home again – and I’ve decided to be more open about the reality. Part of the problem also is that we moved here after I was ill, or actually because of it, so I don’t have any established friendships (not that new friends aren’t great, but they didn’t know the old me, and I don’t have enough energy to put into making new ones properly).
You’re very kind to offer to skype. If you ever have the energy, dm me on twitter and we’ll arrange something – but please don’t put any pressure on yourself – you have to survive your life too 🙂
Thanks for your comments x
I may be wandering off the point here a bit but what Elizabeth has said makes me think of the experience I often here from bereaved people who get lots of attention for a month or two but then are expected to return to normal (whatever that is) and be less “needy”. In both these situations I think it is fair to say you really do find out who your true friends are.
I think that is true (and not off the point at all). Other people’s lives go on, rightly so, and other people probably can’t sustain the effort they put in when someone is in hospital/bereaved. And yes, true friends have an investment in you and want to support you wherever you find yourself – and however long for!
Yes, it is a bereavement in a way – another friend in her 20s talks about “grieving” when she’s missing elements of the life she could have had, were it not for chronic illness.
That’s a good point too! And like all grief its not a straight line but a spiral of levels