What Do You Say to Someone Who Won’t Get Better?

Sage Advice #2

Welcome to Sage Advice, my column where I answer questions about chronic illness and disability. Have a question of your own? Send me a message!

Dear Sage,

You’ve written about not hearing that inner voice that says “everything is going to be okay” post-illness. I wonder if you have advice for a friend or family to a loved one with chronic fatigue and illness, what is something we can say from the outside that is supportive without being totally tone-deaf or head in the clouds unhelpful like “it’s gonna be okay” when in reality it might not be okay actually?

Sincerely,

Mai (see their wonderful Substack here)

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Dear Mai,

This winter, a perfect storm of grief and burnout hit me all at once. I fell into grooves of suicidal ideation I hadn’t been trapped in for years.

I did everything I could to get out of it: I took a leave from grad school, journaled, went out in my wheelchair, started new medications. I talked to friends, family, therapists, doctors, but I just couldn’t seem to shake it.

After months of struggling, I reached out to a friend who had dealt with chronic illness for decades. “I need some help working through my grief,” I told him. He called me on a beautiful day, and I sat by the lake in my hammock as we talked.

“I’m trying so hard to see the good in everything,” I said. “And I can see it, but I just can’t feel it.”

“You don’t have to see the good in everything,” he said. “What’s happening to you is completely awful. You have to experience how awful it is.”

It broke something open in me. I began to sob. He stayed on the phone with me for the next hour while I cried.

After that, I started to get better. A combination of new medications and the changing seasons, surely, but I do believe in part because of that conversation.

This isn’t my answer to your question. You shouldn’t go around telling people their lives are awful and listening while they cry for hours. What helped in that moment wasn’t the specific words—it was that I felt seen.

Every relationship is different, but here are a few general tips on how to talk to a loved one who is struggling.

1. Chronic illness is chronic. Please don’t say “Get well soon.” Try instead, “I hope your symptoms ease up soon,” or “I hope your day goes as well as possible.” A favorite in the disability community is: “Sending spoons!” a cute way of saying, “I hope you have more energy soon.”

2. Please don’t offer false platitudes: “Everything happens for a reason,” or “Look on the bright side.” This instinct often arises from our discomfort with other people’s suffering and is not helpful. Instead, try solidarity. “I’m not going anywhere,” “I love you,” “I am so sorry you are going through this.” We often just want to know we have not been forgotten.

3. Sometimes the best thing you can do is just listen. One easy go-to is reflective listening: just repeat or rephrase what your friend has shared with you. If they say, “I’m so sick of feeling this way,” you might say, “Yeah, I hear how exhausted you are.”

4. The way a person looks is not always the best indication of how they are feeling. “You look better,” or “You don’t look sick,” are meant to sound hopeful, but instead, they can come off insensitive. If you’re looking for a simple compliment, go for “I like your shoes,” or “Your haircut looks great.”

5. Please don’t suggest treatments unless your friend asks for advice. They are already trying a million things, trust me. If you're curious, ask what treatments they’re trying and how they are going. If you also live with chronic illness and want to share something that helped you, go for it, but ask for permission and don’t frame it as a suggestion.

6. It’s natural to want to empathize by saying “I understand how you feel,” or by offering your own story of hardship. Shared experiences can be affirming, but how you relate matters. Instead of comparing or shifting focus, try something like: “Something you said reminded me of an experience I had. Would it be okay if I shared?’”

7. This is a controversial one: “What can I do to help?” Some people feel this question puts an undue burden on the askee–it saddles them with the emotional labor of figuring out what you can do. People often suggest offering something concrete, like: “Can I pick you up some groceries?” “Can I help you clean your house?” “Can I mow your lawn?” or “Can I pay for your streaming subscription?” You may not have the energy for this. In my personal opinion, either approach is valid. Which leads me to my final point.

Don’t let not knowing what to do stop you. You will probably screw up at some point. We all do. Apologize and learn from it. What’s most important is that you don’t disappear.

As you so thoughtfully noted, chronic illness doesn’t just go away. Reach out again and again. Even if it’s just a text. Even if your friend doesn’t respond. Even if you don’t know what to say. Your love will come through, just like it did in your sweet and compassionate question.

With Illness and Insight,
Sage