It’s no secret that when one spouse lives with chronic illness, both spouses live with it. I’ve written before about how chronic illness has affected my marriage. To be honest, sometimes I think I could fill books with this topic! But one of the things my husband has noticed is that there’s very little out there from the perspective of the spouse of someone with a chronic illness.

So I wanted to take the opportunity to share his perspective on things. As we were discussing these questions and he struggled to answer, I found myself asking often, “What do you wish another spouse would share with you?” It’s validating to know we’re not alone in our experiences. And when we framed the questions in that way, he almost immediately knew the answer he wanted to share.

If you are the husband, wife, girlfriend, or boyfriend of someone who lives with chronic illness or disability, I hope you find my husband’s perspective encouraging. And I hope you feel a little less alone in this journey.

1. What is the hardest part of living with a spouse with chronic illness?

I think there are several things that are really difficult:

• Not being able to fix it. I want to be able to do something, and I can’t.
• Loss, for both of us. There are things that we just can’t do anymore. I’d love to go for a walk or ride a bike, or go on trips together. And we just can’t; or at least, not in the way we’d like to.
• Getting frustrated with myself for feeling selfish. There are times when I don’t want to carry the extra load. There are days when I know I should come home from work and help out around the house, and I don’t want to. And I get frustrated with myself for being selfish. You have to live with chronic illness; I can live with having to empty the dishwasher or doing laundry.

2. What has been an unexpectedly good part of this, or something you’ve come to appreciate?

Intentionality. We have to be purposeful about planning times together, taking advantage of the opportunities that we have to enjoy good days.

And closeness. We’ve had to lean on each other more because of this–sometimes physically, but often emotionally. We’ve had to be really open with each other along the way.

3. What’s one thing I could do to make things easier for you?

I think it’s probably specific to each person’s situation. For me, I would say: “Don’t make it worse.”

There are times when I caution you to take it easy or not overdo it, because I know you’ll pay for it later. But sometimes you push through for the sake of getting something done or because you’re feeling a little better in the moment, and then you crash harder on the other side.

4. What’s something we’ve done or learned that’s been helpful?

I think we’ve gotten better at budgeting energy, time, and expectations. If we have something coming up, we make sure we’re prepared (and you’re rested). We’ve learned to sometimes say no to things, or to pass up opportunities. We’ve learned to prioritize.

5. What’s one thing you would say to another spouse living with someone with chronic illness?

I would say you have to take care of yourself, too. For a long time I’ve tried to be the strong one, but this is hard on me too. I’m learning to make time for hobbies like disc golf and smoking meat, but I’m not always good about this yet. This is a marathon for both of us, and it’s important to take care of myself too.

6. What have we done well to keep our marriage vibrant through all of this?

We’ve purposely planned dates and set aside time to be together. We’ve planned some getaways around your health and needs. And we’ve learned to laugh about it. I think that’s been really important. We’ve made each other a priority, even if that means saving energy throughout the day so that we can have meaningful time together.

7. What’s something you wish other people knew or understood about this?

I wish people understood that this is not going to go away, and it’s not going to magically get better. I think that’s hard to understand unless you’ve lived it.

Also, sometimes what we want most is to be treated normally. I sometimes wish every conversation with other people didn’t revolve around this. On the one hand, I want people to be aware of the situation and I don’t want them to ignore it. But I want people to remember that there’s more to our lives than just this.

If you are a spouse of someone living with a chronic condition, what are your thoughts on these topics? What has been most difficult for you? Most helpful? What do you wish people understood? I would love to hear your perspective in the comments below! As spouses in the long haul with us, you need support as much as we do!