How to support someone with an Autoimmune disease

Even after being diagnosed with an autoimmune disease over 15 years ago, I still don't always know how to support a loved one with a diagnosis of their own. When someone we knew is struggling with a health challenge, especially one we can't see or physically touch, 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 unknowingly minimize a struggle because we feel uncomfortable. And yet, we also know that those suffering from autoimmune disease or chronic illness want to be seen, heard and cared for just like anyone else.

That's why I wrote this post to bridge the gap. This is for both the warriors who've been diagnosed and their loved ones trying to offer support along the way. 

​While researching for this post, I reached out to a few of my friends who are living with and managing autoimmune symptoms and asked two simple questions: 

1. What are you tired of hearing? 
2. What do you wish people knew, said, or did instead? 

Here's what came up.

Note: This blog post was originally written as a guest post for The Mighty. So, check out the entirety of the post here! This full post over on The Mighty goes into detail about each type of comment I briefly introduce below.

Because autoimmune disease is often invisible, a person might look healthy or "normal" on the outside while feeling varying degrees of physical and emotional pain on the inside. This invisibility is part of what makes it challenging to know what to say and how to react when a loved one is diagnosed. It's why we might rummage through our brains for any type of support phrase we've heard in the past... without necessarily thinking about how that phrase may be received.
 
"God never gives anyone anything they can't handle."
"If you need anything, just let me know."
"Have you tried [insert solution here]?"
"You know what they say: Mind over matter! Just think positive!"
"Oh, you're going to be fine."
"Well, 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 in the fact that, intended or not, these comments often shut down conversations before they even get started. 

That's why I'm hoping this post can help change the conversation. It's something we can share, pass along and point to when trying to foster space for more intentional, compassionate dialogue. I'll share the type of comments best to steer away from... plus offer suggestions for what to say instead. 

WHAT TO SAY (AND NOT SAY) TO SOMEONE DIAGNOSED WITH AN AUTOIMMUNE DISEASE OR CHRONIC ILLNESS

Note: Full descriptions of each comment type here! 

1. Any implication of blame

"You aren't trying hard enough."
"You're just lazy."
"If only you didn't do X."
"If only you did do Y."

>>> (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 any 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 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 here 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 to better understand each comment type? 

>>> Click here to read the entire post on The Mighty. <<<

Then, I'd love to know: Have you been diagnosed with an autoimmune disease or chronic illness? If so, what are you tired of hearing? What do you wish people knew, said, or did instead?