What’s it like to live with someone with U.C.?

Love forté

So what’s it like to be the partner of someone with a chronic disease?

It occurred to me that this blog has described my own journey, but has not addressed the experience from another’s point of view. Especially someone who has walked beside me every step of the journey.

To stand in a strong wind you need balance not strength. In my life much (most) of my balance comes from Clare.

I’m sure that for many of us that live with a disease there is someone who shares that journey with us.

We’ve been away camping in Wales. Walking on the beach, cooking on the single burner, looking at the stars through crystal clear skies. Our boys now men.

It’s been a long time since I could enjoy camping out. We used to a lot, but the constant trips to the toilet block, and the stumbling through a tangle of sheeting and guy-ropes in the small hours had made it rather difficult. This is no longer an issue. So “woo hooo!” we’re camping.

One night outside our tent I recorded a conversation with Clare and we talked shit; Josh made some jokes and I faddled with my recording device. We take up the recording just as I have got it all sorted out:

Clare: . . . . .Have you ditched that? Because I think that laughter could be quite useful?

Me: Yes indeed. That’s true.

Clare: So you’ve just ditched that and you’re editing already.

Me: Alright. . . OK.

Clare: I think that’s bad actually. Because you’re editing as you go along.

Me: I am aren’t I?

Clare: Mmm, yeah there was a lot of laughter . . . The question was when did it all start. And God! – it’s been going on forever.

Me: Has it?

Clare: Well a very long time.

Me: ‘97.

Clare: Yeah a long time.

I don’t remember a beginning but it became very apparent after an amount of time – and I can’t remember how much time it was - that you were quite ill. And it kind of affected everyone else’s lives.

You were in denial and everyone else – by which I mean Me and Josh and Gabriel -were looking on and thinking “actually this is pretty crap”.

I don’t know how long it is . . . maybe - 10 years is too much . . . between 10 and 5 years, I don’t know how long . . . but it’s been difficult.

Me: Of course it’s been difficult . . . What would you say have been the most difficult aspects?

Clare: Well it’s only been really difficult when you try and step outside your normal everyday life and – I suppose have a holiday – like going camping or traveling to Italy or going to New York, or deciding to go on the London Eye. You know whenever we’ve decided to do something as a leisure activity it would just be really difficult because you couldn’t relax into the event.

But we’d just go along as normal and try and plan things, like days out and doing this and doing that, but whatever we had planned suddenly when we were on the day out it would be obvious that it couldn’t go on as normal because we either had to get there very fast or we had to stop and be thinking about where a bloody loo was. (Laughs) ha, yes so . . . days out were full of tension and spoilt. (Laughs) Everything revolved round shit and getting to the loo.

(Laughter from both)

Are you still recording now?

Me: Yes

Clare: Oh good - good. But it wasn’t something that could be complained about because of course you were ill and we just had to accommodate you know – The Illness. So privately in my head I was thinking “God this is really annoying”. You know “it’s not fair” . . . but I couldn’t really express that because you had to deal with your own emergency.

(I laugh)

So it was just like dealing with someone with a life in emergency.

Me: I used to hate it when we’d be driving along in the camper van and I was realising we had to stop, you know. It was very embarrassing.

Clare: Just get out and deal with it behind the van – the annoying thing was that you were embarrassed. That was actually annoying. Because we knew what the problem was and we just thought get on with it and have your difficult moment.

I was actually pissed off with your own - your hang ups about . . .

Me: . . .What crapping in public?

Clare: Yeah.

Me: Thanks. (Laughs) It’s a fair enough hang up to have isn’t it?

Clare: Well. . . yeah but. . .having established that that was the big problem I suppose you got a double whammy. Not only were you shitting your pants but also it was an embarrassing thing to do.

(Both laugh)

Me: Yeah?

Clare: Yes (laughing) but it was quite a burden for everyone else to deal with. Yes it’s embarrassing because someone in your family is about to shit themselves, but also they have got a huge hang up about the fact they are going to shit themselves.

(Explosive laughter)

Me: I think you might find that I was with most of the population here . . .

Clare: I think you had a huge problem with anything lavatorial. I do think it was a double hang up. I mean you only have to look at your grandmother to see that there’s always been a big issue with the lavatorial. So I was dealing with a double hang up.

Me: So; are you saying then that you subscribe to the psychosomatic view of the ulcerative colitis?

Clare: Oh No! Not at all. No. No No No. I’m not denying the condition you found yourself in. And of course it was very embarrassing and very difficult to deal with. No I wasn’t straying on to that at all.

Me: No?

Clare: No; what I’m saying is that you found yourself with this very difficult condition to do with your bowels BUT layered on top of that was your own family’s difficulty with shit and bowels and . . . I think you had layer upon layer of difficulty.

Me: A kind of a layer cake . . .

Clare: Yes. You had difficult periods and periods of remission I suppose. It wasn’t dealt with for a very long time. You avoided going to doctors

Me: Well I don’t think I did avoid them, I have to object, I don’t think I did avoid going to the doctor.

Clare: Well . . .

Me: I didn’t avoid doctors at all.

Clare: Well there was a period where you were obviously very ill and nothing was being done about it. And I know there was a time when I spoke with Josh and Gabriel and their opinion was “Why the bloody hell doesn’t he just go ahead with the surgery that’s been recommended?” Because it’s really difficult for everybody.

Difficult for you; but also difficult for the rest of us. I just think we got to a point where we were then dealing with another layer in the whole thing which was your huge fear of surgery; which was completely understandable . . . we could understand that, but you had this huge block.

Everybody: i.e. me, the surgeon, Josh and Gabriel, could see that there was something very obvious that needed to be done to help you but were resisting it. We just all thought why don’t you just go ahead with it – but it wasn’t for us to say.

In addition to the problem of illness, and the problem with your own sort of family hang ups with shit and stuff, there was another layer which was “being told what to do” and going ahead and agreeing to surgery. So it was just layer upon layer of hang ups really.

Me: I feel when I look back on it that what was normal had shifted – we couldn’t go camping, we couldn’t do this and we couldn’t do that.

Clare: Yeah. I think it had. Just lots of things we wouldn’t consider doing. I think sometimes I pushed and hoped that we could do those things and we did because I pushed.

We just didn’t do much. I mean I think the last straw was the Italian holiday where we thought were going to have a nice holiday in Italy, and in fact Josh and Gabriel and I did have a nice holiday. But you were completely lame – you couldn’t walk, you couldn’t go anywhere, you completely missed out. I‘m sure you did your own stuff but . . . but really it was like three of us doing one holiday and you doing your own thing.

Me: Hmm. True yeah. I had a very different experience of . . . (laughs)

Clare: I remember deciding to go on the London Eye and we couldn’t bloody walk there fast enough because we had to get there by a particular time. And the whole walk from St Pancras to the London Eye was affected by whether you could get to a loo.

The whole thing was suddenly this sort of really stressful route march. Then I ended up sort of feeling guilty because I’d planned it, and organised it, and we needed to be there by a certain time. I just thought I wish I hadn’t bothered and I didn’t plan anything like that again.

Me: Hmm. Sorry.

Clare: I suppose I can say it now because we’re on the other side; but beforehand I didn’t like to say anything like this because it just seemed really selfish. To complain that you couldn’t plan a particular day out or a particular holiday because you were in a far worse condition, and that was the thing that really sort of ruled what went on.

So I didn’t feel in a position to say “This is bloody annoying” Because my discomfort or irritation at something not happening was fairly small compared to the reality that you were physically incapable of doing the things that we wanted to do together.

Me: I can’t believe the place that we got to, to be honest.

Clare: I felt I put myself completely in the back seat. I knew that you were really concerned about yourself but in way I could not worry about that because you were there dealing with the pretty frightening prospect of having surgery and having really drastic emergency experiences.

I thought there’s no point in me worrying about that because I’m sure you’re doing lots of worrying about that yourself. So the role I felt I was playing was I was actually – I think I was really concerned about what Josh and Gabriel were thinking. Because it could have been – it was pretty momentous for them, and you were very ill and of course you know – you could have died .

So I felt a bit straddled between worrying about them and there was that sort of worry about you.

For myself? . . . don’t know I just . . . I would have dealt with what ever happened. Because whatever happened . . . I mean you know if you died you would have died, you know. . . and I wouldn’t worry about you then because you’d be dead and you wouldn’t be worrying. I mean I knew in theory you’d be pissed off about that but you’d be dead so it wouldn’t matter.

Me: (Laughs) You can’t fault that logic.

Clare: I blotted myself out and if you died . . . . pfff . . I sort of you know – in a rather brutal way I didn’t care because I’d then – I suppose I would then come back into the equation and I would have worried about me.

I think in that sort of situation you have to have to sort of cut to the chase. I think I’ve done a lot of that for the last few years. Just not worried about what I think you know. The fall out might be about to hit us. I don’t know. Cos I think there’s a lot of shit going on you know. I’ve spent quite a lot of time over the last few years not thinking about myself. Putting myself away.

Me: I think nobody can possibly doubt that.

Clare: So it might be . . . so there might be. . . I sometimes wonder if there might be . . . you know actually I’m fed up of feeling like this.

Me: Well that would be quite understandable. How would you advise somebody else if they found themselves in your situation? Is there anything you can say to somebody in that situation?

Clare: I don’t think I would say anything, I couldn’t at this point. In an interview like this . . .if somebody was in the same situation and they wanted to talk to me then I could have a conversation. But I would have to be responding to what somebody else was saying. I wouldn’t give advice or say anything. I wouldn’t say anything into the blank out-there-ness.”

Posted with love.