A few months ago I shared a post listing 5 Things to Stop Saying to Someone with Chronic Illness and included what to say instead. Autoimmune disease is hard for people to understand and sympathize with for many reasons. First, many autoimmune diseases are invisible and the symptoms, like fatigue & brain fog, are crippling but hard to describe. Second, even if your friend has a cousin who knows someone with your diagnosis, it doesn’t mean they’re experience is the same as yours. They could be able to simply eat gluten-free and go along their merry way resulting in those around you expecting you to do the same. However, those of us living with it know the same diagnosis presents differently in different people. Third, it’s just hard for people to understand something they have never experienced themselves BUT that doesn’t give them permission to be rude, inconsiderate, or ignorant. It just means that it may be up to you to educate them on what to say instead.
I mentioned before that I could write a whole blog post of a bulleted list of all the crazy, hurtful, and downright rude things people have said to me over the years. Well, I got all fired up because I heard a new one recently and felt inspired to share 5 MORE things not to say to someone with chronic illness.
5 MORE Things Not to Say to Someone with Chronic Illness
and what to say instead
1. If I had a disease I wouldn’t talk about it so much.
Yeah, more than one person has said this to me over the years. Well, you know what? Through talking about my disease I’ve had the opportunity to help so many people live happy and vibrant lives with autoimmunity. Imagine if I had listened to them and kept my mouth shut? HA! Seriously, I don’t know where the motivation for this kind of hurtful comment comes from. What we hear is that you have no interest in getting to know me because this thing you want me to stop talking about has literally shaped the person standing in front of you.
What to say instead: If this comment comes to mind, just don’t say anything at all.
2. I feel really sorry for you.
I think the intentions behind this kind of comment are coming from a place of genuine care, but it comes across as really demeaning. Honestly, these kinds of comments still leave me speechless because I always feel the same way: belittled and pitied. Like I said, I think this comment comes from a sincere place, but it’s usually said in response to being vulnerable about the struggles of living with chronic illness. This comment makes us shut down. Instead, continue to ask questions and be curious to learn more about our experience. Trust me, if you ask something too personal we’ll tell you.
What to say instead: Tell me more…
3. Oh yeah, I think my neighbor has that…
Oh wow, really? Cool… great… can’t wait to hear more… Catch the sarcasm? Don’t get me wrong I obviously love connecting with other autoimmune warriors, I do it for a living! But please don’t try to directly compare my experience with that of your neighbors. Two people can share the same diagnosis but have VERY different experiences, not just physically but also emotionally, mentally, and spiritually.
What to say instead: Tell me more about how it feels to live with your diagnosis.
4. I’m really tired too!
Every person’s experience is valid. No one’s fatigue is worse than someone else’s, it’s just different, so please don’t compare. Until you’ve experienced chronic fatigue you can’t understand the difference between a restless night and feeling so exhausted after taking a 5 minute shower you have to go back to sleep for 3 hours. The same goes for any kind of symptom. So, your stomach ache or fatigue are totally valid, but please don’t compare yours to mine because I don’t do that to you.
What to say instead: What do you do to deal with your [insert symptom here]?
5. Let me know what I can do.
This is a good-intentioned comment, it’s just worded the wrong way. Basically when you say this, it puts the responsibility on us to reach out to you to tell you what we need. When we’re in the middle of a flare, I can guarantee we don’t have the energy or brain capacity to be able to do this but we really really could use your help.
What to say instead: Offer a few concrete things you feel comfortable helping with (picking up groceries, taking the kids for the afternoon, bringing over a meal, talking on the phone to just listen) and then do them, without being asked. I promise you won’t be imposing, we would really appreciate it.