Loving Someone with Chronic Illness

Having a partner or family member who is dealing with any type of chronic illness is difficult. Sometimes you wish you could make them better, so they wouldn’t have to struggle anymore. Sometimes you resent that they need so much care and time—and it’s okay to feel that way, by the way, as long as you aren’t taking it out on them or others.

When you have a loved one who deals with one of the so-called “invisible illnesses,” it can be even more difficult. How can they say they don’t have strength to help clean the house? They look perfectly fine, and they didn’t have any trouble going to the kitchen for a glass of water. How can they say being at a family gathering on a holiday is triggering? My family’s perfectly nice, nothing at all like the one that abused them. How can they spend the entire day in bed and not do anything? There’s so much that has to get done!

People with those illnesses, which include mental illnesses, chronic pain conditions like fibromyalgia, migraines, and others, don’t “look sick.” And because of the nature of those illnesses, sometimes people who have them don’t *feel* sick either. Personally, I have a few “invisible illnesses.” Some days I get up, shower, get dressed, and I’m off to tackle the day, getting more done before bed than my husband says he would be able to do in a week. I walk fairly easily, and I appear, and sometimes even feel, happy.

But other days, the “demons” attack. I feel like the world’s going to end, and I can’t stop crying. I’m in so much pain and having so much trouble with coordination that walking from the bedroom to the bathroom—which is right beside the bedroom—is almost more than I can manage. I can’t leave the house. I force myself to at least be in the living room instead of the bedroom, but that takes so much out of me that I end up dozing on the couch most of the day.

My husband is wonderful on those days. He knows I’m not “faking it” or “lazy” when I ask him to go to the store because I can’t manage leaving the house, or when I ask him to finish mopping the kitchen because I’m too exhausted after only doing a third of it. But it took a while to get on the same page about him helping me with tasks. If I said, “I can’t handle going to the store, but we need things,” he sometimes said, “Then I guess you have to go to the store.” I had to learn to actually ask him to go instead of hinting.

It also took him a while to understand that if I say “I’m in so much pain right now, I hate this,” I’m not asking him to fix it. There isn’t anything he can do about the pain. I’m asking for comfort and for reassurance that I’m not burdening him by asking him to take over doing some of my usual tasks, and now that he realizes that, he’s great about giving me a hug, or walking me to the bedroom and bringing me a glass of water while I settle down to read or sleep.

It isn’t easy having an “invisible illness” (or more than one). It definitely isn’t easy being a loved one of someone who has “invisible illnesses,” something I also know from personal experience since I’m not the only one in my family who has them. But if you work together to figure out what the person with the illnesses needs, and how to meet those needs without sacrificing others’ needs, and if you recognize that at the base, the person with the illnesses most needs love and compassion, it can be managed.

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