I do not have a chronic illness. I have not had to live in a body that seems to be working against you. I have not had to make peace with an illness that has robbed you of so much. But I have cared for the chronically ill for my entire career, and that has been my focus for the last few years. I have listened to their frustrations and goals. I have watched as they celebrated the victories and chronicled the setbacks. I don’t have all the answers, and I don’t always know the right thing to say. But I have learned many of things not to say, which is just as important when you’re supporting friends with chronic illness.
I would not presume to speak for everyone who has a chronic illness, as they all have different desires and goals. But I would like to offer some advice to the rest of us who live in community with them.
They Just Want to be Normal
People with chronic illness do not want to be defined by their illness. This looks different for everyone, of course. Some people need to talk about it, and you may be their safe place. But some people want to spend as much of their life as they can thinking and talking about other things. In these cases, supporting friends with chronic illness may just mean talking about normal life. Ask how they’re doing, but let them take the lead on what or how much they want to share.
They’ve Probably Already Heard the Cures
As I mentioned above, sometimes it’s more about what not to say to someone with chronic illness. This is also going to depend on the intimacy of the relationship. But it is unlikely that the cure you read about on the internet is new information to them. They’ve probably seen the commercial for that new medication as well. I know people mean well, but I have heard so many stories from patients about unsolicited advice they receive—and the ways they’ve learned to bite their tongues and smile when they receive it—that I would caution you to not take on the role of “cure researcher” unless you’ve been specifically asked.
They Have to Steward Their Health Carefully
Chronic illnesses take a toll on multiple organ systems. Many illnesses cause pain. Many cause a lot of fatigue. A lot of patients make hard decisions to power through for special events, but know they will pay the price for it days later. Caring for someone with a chronic illness may just mean understanding their limits and giving them grace. So if your friend turns down your shopping trip, and the next day you see pictures of her out having fun with her family, it’s not personal. She made a hard decision to give her family all she had to make a memory.
Everyday Setbacks are Bigger for Them
“Immunocompromised” became a household word during the 2020 Covid epidemic. Most people think of the immunocompromised person as the cancer patient in the middle of chemo. And that person is certainly immunocompromised! But it could also be the young mom with rheumatoid arthritis. Or the middle-aged coworker with Crohns disease.
Many of the medications that treat these conditions affect the immune system—in order to keep the inflammation of the chronic illness at bay, we often have to tamp down the immune response. What is a cold to you may mean days of illness for them. It may take them longer to recover. They may have to stop their medication so they can get well. Then they increase the risk of a flare. Anytime a medication is stopped and restarted, there is the worry that it won’t work as well. And switching medications means doctor visits and labs and prior authorization requests. Even if it doesn’t come to that, just the idea that it may take time to get back to the level of control they had before is worry enough.
They Are Living Wisely, Not in Fear
Chronic illness is a cruel thief. It robs people’s energy, finances, and abilities. In a life already filled with pain and illness, they have to balance what has to be done with what they are able to do. They are not being overly cautious or living in fear, they are trying to steward their health in light of extra limitations. Your friend isn’t being dramatic if they make choices you don’t understand, they are trying to live wisely with known risks and limitations.
Chronic disease affects people from every walk of life. Because we live in a fallen world, disease and illness are inescapable. There is no one-size-fits-all approach to managing a chronic disease, nor is there a one-size-fits-all approach to supporting them in their struggle. But these are some things that your friend might be feeling, and understanding this might help you love her well.
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The part about unsolicited cure advice reminds me of testimonies I’ve heard from people grieving the loss of a loved one. They probably don’t want to hear that everything happens for a reason or that God needed their loved one in heaven!
Thank you for this! My wife has been dealing with a chronic illness for the last few years, and everything you say here is spot on! Under things not to say, I might add speculation about how they developed the chronic illness — especially speculation that makes it their fault. Have we learned nothing from Job’s “miserable comforters”?
You’re welcome! I’m sorry your wife is dealing with this. You bring up an excellent point, and it’s something I have mulled over in other contexts. Thank you for bringing it to light.