This was originally written in 2017 before I knew I was autistic. I am re-publishing it unedited as part of a series about coexisting conditions.

When you’re in a relationship and you have a chronic illness you’re not in it alone. Your partner might not experience the symptoms but they’re living it with you day-in-day-out.

I recently came across a piece of research by Golics et al (2013) exploring the impact of patients’ chronic disease on family quality of life. Interviews were conducted and 10 areas of life were frequently mentioned as being impacted by chronic illness. These were: emotional impact (mentioned by 92% of subjects); daily activities (91%); family relationships (69%); sleep and health (67%); holidays (62%); involvement in medical care and support given to family members (61%); work and study (52%); financial impact (51%); social life (37%); and time planning (14%).

It made me wonder what my partner’s experiences were as we’d never really spoken about things from his perspective. So I decided to interview him using the interview questions from the above study as well as some follow-up questions. Now he can be a man of few words, but here’s an insight into what life might be like for the partners of those with chronic illnesses:

The interview

Can you tell me about any ways your life has been affected by me having Fibromyalgia and associated conditions?

Well…I have to be gentler with you, just in general. You’re very susceptible to prods and pokes [both laugh]. Ummm…what else? I guess the pace of life is a bit slower. I don’t think we did too much before anyway, but it does affect going out and doing stuff. We especially don’t do things now.

And how does it feel to be living with somebody with Fibromyalgia?

I don’t feel any different to how I felt before really. We’ve made some accommodations but…

Things are not always as stable as they are now are they? So do you feel like along the journey your emotions have changed?

I guess at the start it was quite hard to come to terms with.

In what way?

Just the thought that it’s going to be lifelong…a lifelong thing. It’s always hard to comprehend something that’s going to last forever isn’t it?

Yeh, and obviously we’ve talked about how that felt for me. But what was going through your mind at the time?

I felt sorry for you…to a certain extent I felt bad that I couldn’t do anything.

OK. And when I can’t do something or we can’t do something, what emotions do you go through then? Or if I’m oo’ing and oww’ing a million times in a day? [both laugh]

Well yeh I guess sometimes there’s a bit of anger because… something that’s just simple for me to do, we sometimes can’t do it.

I think you’ve touched on this a little bit already, but do you feel your activities have changed as a result?

Yeah, but then I think I’ve always done the same sort of stuff anyway. And I spend a lot of time on the computer doing stuff. I don’t think they’ve changed a lot, but then maybe that’s why I’ve found it easier to come to terms with

Because it wasn’t such a big life adjustment?

Yeh. Like imagine if we’d have liked snowboarding or something?

Yeh I see what you mean. So when you have the moments of frustration or anger, how do you cope with feeling like that?

I don’t think I really do…well I do. [thinks] I think I just accept it. That’s tricky to think about. I don’t think I have any particular coping mechanisms. [after some thinking] – I think I probably make sarcastic quips which might upset you, but obviously I don’t set out to upset you. That’s unintentional.

So what would be your intention for yourself?

Well it’s just voicing your frustration I suppose, isn’t it? And I never intend to make you feel bad because that’s not what I’m like.

It’s just your way of letting off steam maybe?

Yeh I think so

Do you ever talk to other people about it?

I once spoke to Rob (friend) about it. It’s hard to explain what I said. I said something like ‘I’m going to have to deal with it all my life’…but I didn’t say those words. It was something that came across like that and Rob was like oh yeah but poor Emma as well. And immediately I was like ‘oh god, of course!’. But we were chatting about me and him, and I was chatting about myself. And I was just saying that it’s weird to think that it’s something that will be there forever.

So it’s like it’s a part of your identity now? You’re a partner of someone who’s ill and you have to take on more responsibilities.

Yeh

So how does it affect your social life? Are there any activities you used to do but you can’t do now because of my condition?

I think maybe because you aren’t going out, I don’t want to go out so much either.

Like the things we maybe would have done as a couple?

Yeh I suppose they happen less now. And maybe I’ve withdrawn a bit.

What affect do you think it has on day-to-day activities?

Well obviously we can’t do much late at night because you get quite tired. And in the house I feel like we’ve got a good routine down – even though I don’t follow it!

But that’s had to be a big change hasn’t it, because there are now jobs I can’t do and so they have to be your jobs.

Yeh but it doesn’t bother me.

Do you feel that our roles and responsibilities have changed as a result?

Well you’ve given me more to do in terms of housework but that’s only fair anyway because I did nothing before!

I think that there’s been more of a change in…whereas before I was a bit harder and insisted on doing everything for myself, since I’ve been unwell I’ve had to let you in a bit more. And you’ve taken on a bit more of that caring role which maybe I would have done.

I think it’s helped because…well it’s ironic that now you’ve got fibromyalgia you’re a much stronger person.

But also I think it’s brought us closer together because…

We’re fi-bro’s aren’t we? [both laugh]

It’s brought us closer together emotionally because we’ve had to depend on each other.

Yeh I agree

Does it affect going on holiday?

I suppose it will to a certain extent because you’ll get tired and we won’t be able to do as much. But we just tend to go on more chilled out holidays now anyway.

That’s interesting you say that, because I think it affects it massively. Think about when we went to Norway and you were really having a go at me because I couldn’t keep up with you. But we were climbing up a sodding mountain! Looking back I don’t know how I did that at all.

I didn’t understand then. Back then I just thought you were being dramatic…[in a whiny voice]: ohhh it’s so far to go!

[laughter]. I was really trying!

Obviously I know that now

Even if it was only a small mountain, to me that’s a massive achievement when I think about it.

Do you think it’s affected your health at all, either physical or mental?

No, I don’t think so.

What about your job?

Again, I don’t think so. But then I’m lucky I can work from home and that gives us some flexibility.

Have you had to change what you eat?

We do eat a lot healthier now which is really good. Well I say this as I eat a bowl of chocolatey squares after some sweets.

I suppose that’s a positive (not the sweets). Sometimes I feel frustrated that we have to prepare things from scratch but actually having to focus on eating nutritious foods has helped the both of us.

I agree. I think we do eat a lot healthier now.

To finish off, if you had to give one piece of advice to a partner of someone who was unwell, what would it be?

Embrace it, because it will cause you anger and frustration otherwise. Just know that you can enjoy a more chilled out life, and it’s fun.

That’s nice 😊

Oh, and play lots of video-games as well and stay up until 3am.

*shakes head and rolls eyes*

What did I learn?

This was a really interesting experience for me and I wondered why this wasn’t a conversation we’d ever had before. Whether or not he would identify as a ‘carer’, this has become a part of my partner’s identity. It isn’t only my life that has changed. In dark moments I have felt like a burden and assumed that I had forced him into a lifestyle he must hate. But that didn’t come across. He was honest that sometimes he gets annoyed and frustrated, but overall he enjoys our life. And that’s really nice for me to hear. It made me realise I need to be kinder to myself. We can see things differently in terms of the impact on daily life. Perhaps this is because only a few of the adjustments I have to make have a direct impact on him. Before this I had thought that he would feel the impact more. It felt good to check in and see how he was doing, without the focus being just on how I was feeling.

Over to you

Partners and carers – I’d love to hear your experiences and how life feels for you. Is there anything you wish those of us with chronic illnesses knew about its impact on you? Is there anything that might help you become a better, more supportive partner? What advice would you give to others?

My fellow chronic illness warriors – would you consider having these conversations with your partner? Or if you have, how did it go? What do you wish your partner knew?

Leave me a comment below or contact me with your story.

References

Golics, C.J. et al.2013. The impact of patients’ chronic disease on family quality of life: an experience from 26 specialties. International Journal of General Medicine. 6: 787-798. [Online]. Available from:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787893/#!po=31.9672

[Accessed 7th November 2017]