Even after living with an autoimmune disease for over 13 years, sometimes I still don't know how to support someone with an autoimmune disease. Because when a loved one is struggling it can be hard to say the right thing or know how to act. Sometimes, our desire to not make matters worse will leave us not saying anything at all. We avoid conversations, bring unnecessary humor into awkward lulls, or even minimize a struggle in order to end a discussion as quickly as possible.
But I also know that those suffering from invisible illness, such as an autoimmune disease, chronic pain, or mental illness, want to be seen, heard, and cared for just like anyone else.
So, I wanted to write a post to bridge the gap.
A post talking about how to support someone with an autoimmune disease. It's for both warriors fighting an invisible illness -- and their loved ones trying to offer support along the way. It's helpful during the diagnosis process -- and the treatment. After sharing a bit about how to support someone with an autoimmune disease... I'll also provide a response for warriors... with the things that WE can say to steer conversations in a more nourishing way!
Note: This blog post about how to support someone with an autoimmune disease was written as a guest post for The Mighty. So, check out the entirety of the post here. This post goes into detail about each type of comment!
Sometimes, autoimmune diseases are invisible. Which simply means that one may look healthy and "normal" on the outside while feeling varying degrees of physical and emotional pain on the inside. This is part of what makes it challenging to know what to say and how to react. The "invisibility" of the pain is why we are sometimes left grappling for any phrase we've heard in the past -- without putting a ton of thought into that phrase and how it might make a loved one feel.
"God never gives anyone anything they can't handle."
"If you need anything just let me know."
"Have you tried to [insert solution here]?"
"You know they say mind over matter... just think positively!"
"Oh, you're going to be fine."
"At least you don't have X!"
While these phrases are most often well-meaning and an offer of support, the problem lies in their emptiness -- and the fact that, intended or not, these comments often shut down conversations before they even get started. Again, this is a post to help change the conversation, both for those with invisible illness and for their loved ones. It's one post to share, pass along, and point to when opening up space for more intentional, compassionate dialogue.
While researching for this post, I reached out to a few fellow warriors and asked two simple questions: What are you tired of hearing? What do you wish people knew, said, or did instead?
Here's what we came up with.
WHAT TO SAY (AND NOT SAY) TO SOMEONE WITH AN AUTOIMMUNE DISEASE (AND WHAT TO SAY INSTEAD)
1. Any implication of blame
"You aren't trying hard enough."
"You're just lazy."
"If only you didn't do X."
>>> (LOVED ONES) What to say instead: "I see you working so hard, and I'm so sorry you are having to overcome this." Or, "I hear what you are saying and I'm here to help you figure this out."
>>> (WARRIORS) How to respond to the implication of blame: "I'm doing the best I can with what I have. Maybe this blog post (or book) can help explain it. This is what I experience on a daily and weekly basis."
2. Unsolicited Advice
"You just need to (stop eating // exercise more // insert the latest health fad)?"
>>> (LOVED ONES) What to say instead: "Thank you so much for sharing. I can't imagine having to navigate X (a particular struggle). I know you don't know what's going to happen, but know that you're not alone. We're in this together. I'm going to pick up dinner tonight, ok? We can have a girls' night, watch movies, and relax?"
>>> (WARRIORS) How to respond to unsolicited advice: "You know, I'm working with an awesome team of doctors and finding what works for me. For example, making sure I carve out time for...." Assume that your loved one is trying to help and let them know what actually works for you!
Note: This is, of course, very different than when a loved on ASKS for advice! If someone is reaching out to ask "Have you tried..." or "Do you know of any resources for..." or "What would you suggest?"... then certainly share away!
3. The But Rebuttal
"But, you don't look sick?"
"But, you always seem so bubbly and happy!"
"But, you eat so healthy... how could you be sick?"
"But you do so much, you can't really be in that much pain?"
>>> (LOVED ONES) What to say instead: "What did you say you're experiencing? Can you explain it to me? How does it make you feel?" (Not in a therapist-sitting-on-the-couch kind of way, but in a curious, what-do-you-experience-that-I-can't-see kind of way.)
>>> (WARRIORS) How to respond to the but rebuttal: "I'm glad I look great, but I don't feel well. I guess I've gotten pretty good at trucking along. You see, here's what I experience on a daily basis..."
4. The quick disregard or minimization
"It's all in your head..."
"Mind over matter..."
"Just be happy!"
"Snap out of it."
>>> (LOVED ONES) What to say instead: "I know you don't know what's going on, and doctors might not know either, but I'm ready to help you figure this out. And to find someone who understands what you're feeling. We're in this together."
>>> (WARRIORS) How to respond to quick disregard or minimization: "You're right, positive thinking is pretty cool. But, I also experience physical and emotional symptoms. I know you can't see them, so here's what a typical day is like for me."
5. The empty condolence
"God only gives what you can handle."
"You're so strong! You'll be fine!"
>>> (LOVED ONES) What to say instead: "I'm here for you. We've got this. I'm running to the grocery store later, can I pick up anything for you? Actually, just give me your list."
>>> (WARRIORS) How to respond to the empty condolence: "You know how sometimes you just don't want to be strong? When life feels too big? I'm sure you've had a moment like that. Well, that's where I am right now. I don't want to think about getting through it -- I just want to feel for a minute. Feel sad. Feel angry. Feel confused. Will you sit with me while I do?" (Or drive me to an appointment, or call to check in tomorrow morning, etc.)
Want to read the full post?
>>> Click here to read the entire post on The Mighty. <<<
Do you struggle with invisible illness? If so, please share this post with family and friends to help spread the message and create more intentional and compassionate conversations around illness.