What My Husband Shared When I Interviewed Him About Marriage and CFS

I have been unwell for three years now and unable to work for the bulk of that time. Having a chronic illness can create a complex range of challenges for relationships. Everything from guilt and resentment to feeling like one partner is contributing more than the other. Although my husband and I have spoken on many occasions about how we’re feeling, I recently sat down with him to gather specific insight into his thoughts. We both sincerely hope that his perspective can assist any other people in our situation. Thanks for reading.

How did you feel when I was first properly diagnosed with Chronic fatigue syndrome?

“In a roundabout way I felt relieved. It was good that we could actually put a diagnosis around it rather than not knowing or hoping or waiting. It was good to be able to pinpoint it and think, ‘Well that explains a lot.’ And it could have been a lot worse. But also, at the time I probably didn’t realize the gravity of it.”

What was it like when I told you I couldn’t work anymore?

“It all feels like a blur because it wasn’t like suddenly there was a critical moment, like when you break a leg. Your decline was gradual and it was more that you couldn’t work ‘at the moment’ because we all believed it wasn’t going to be for that long. At the time I took the approach that it was an illness or an injury like any other, and that you required treatment and time off to recover…again, not thinking it would last for this long. But I suppose I’ve learned to adjust over time.”

How do you feel now that you’re the sole income earner?

“How do I feel now? Sometimes worried, sometimes I put a lot more pressure on myself subconsciously. I think there’s just a lot more worry around money and finances and the future because one, It’s not like I’m just a sole income earner and you’re just sitting here – there’s still a lot of medical bills for you. And, two, I think about, ‘What does me as a sole income earner look like in 30 years?’ What does our retirement look like? What does the next 30 years look like in terms of what we can do with our lives? And I also worry about what if something happens to me. Deep down I feel like if something happens to me everything comes tumbling down so there’s subconsciously a lot of pressure. It’s also why I went and insured myself for so much so if something does happen to me, you’re still taken care of.”

Is there anything you wish you’d done differently since I became unwell? I don’t have anything in mind, just seeing if you do!

“Sometimes I wish I’d taken a more active role in your treatment. But, there’s a balance between the time and energy I put into my work and my wellbeing, versus how much I focus less on that to focus more on you. But if I do focus more on you, I wonder if I put my income in jeopardy? I can’t be flippant with work because now there’s more importance placed on my job. But sometimes I do feel guilty and think, ‘Should I put all the other things on the back burner and just focus solely on you and your treatment?’ I think that maybe if I did that I could be able to help more. But I don’t know…

“I also think it’s pretty obvious that early on I didn’t appreciate how bad you were because I can’t see it (your illness) and I probably expected a lot of you being home all day, like you could do more around the house. So I feel like I should’ve been more understanding early on.”

What does it feel like in general being married to a person with a chronic illness?

“It’s not that different. You’re still the same person and I still love you. There’s no doubt it would test a less-solid marriage but I consider us to have a pretty strong relationship. And yeah, you’re still the person I married and I signed up to ‘in sickness or in health.’ One way to look at it is that it’s just a part of life and at various points people will be sick, or people will have an accident…you can’t write the script.”

In what way do you think it would test a marriage?

“If you had a marriage that wasn’t strong in the important areas then I could see people having second thoughts around, ‘This isn’t what life should be like,’ or, ‘Why should my life have to suffer because you’re sick?’”

How do you feel about the future?

“Definitely very uncertain, there’s a lot of uncertainty. We have less foresight on how our future will look. It’s a question of if/when you’ll get better and it’s a lot harder to make longer term decisions because of that uncertainty. Especially financial decisions. And I think that a lot of the time I try to avoid thinking about it. Sometimes there’s nothing wrong with focusing on the here and the now. And sometimes no amount of thinking or worrying can change or fix it. I’m foolish if I think that I can solve it on my own so worrying about it isn’t going to bring about any change. By not thinking about it,you also escape it a little bit.”

Has anything surprised you in a positive way, or has anything good come from this?

“I’m not surprised but I’m glad that we still have a really strong love for each other. And I think at times we’ve tried to accept or acknowledge that there’s a greater good at play here. Whether that’s a cop out to justify it or maybe there is a purpose meant for you that wouldn’t have happened if you didn’t get sick. You also get to spend so much time with our fur baby which I’m quite jealous about!”

If you could give one piece of advice to someone else in your situation, what would that be?

“You need to really trust the other person when they say that they’re not feeling well and trust that there’s nothing they can do about it. You need to be patient and really understanding of the things that they’re saying and how they’re feeling.”

Any questions for me?

Him: “What worries you and keeps you up at night?”

Me: “A mixture of the future and lamenting what my life was like beforehand. So on one hand, worried about what our life looks like now and into the future, and especially what this all means for my career. And then, missing what he had in our lives before this and especially missing work and that part of my identity.”

Is there anything you want me to know that I haven’t already asked about?

“I probably underestimate how shit it is what you’re going through and how your prime years have been taken away. So, you being able to stay positive has been a pretty amazing thing to watch. Ninety-five percent of the time your mindset and your attitude is really good and I’m proud of the way you’ve gone about it. And I’m impressed that you’re trying to do other things like your writing and your blogging.”

A lot of things can test a relationship and a significant health concern is definitely one of them. The key for us in our relationship is communication. Ensuring that we’re honest about our feelings and accept that there’s going to be some pretty low times helps us to cope as a team. We employ empathy wherever possible to try and put ourselves in each other’s shoes and forgive each other if we’re having a bad day. Having the support of my husband has been a huge source of strength for me and I’m beyond grateful to have him!

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