Allison at Taking Life For a Spin posted a wonderful list of things you shouldn’t say to someone with chronic health issues.
I liked it so much I asked her if I could post it on my blog, luckily she said yes.
Please think twice before you say these things to me
(or to anyone with a chronic health problem):
First, before you read this list, know that if we talk regularly, you have probably said at least one of these things to me before…and that you’ll probably say them to me even after reading this list. It is ok. I love you anyway…and I know that you say these things out of love. I just want you to know why you get those awkward responses from me when you do say them…
- But you look good. I know you mean this in a good way, but just because you can’t see my illness doesn’t make it is any less real. Complement my hair or outfit or something, I’d like that. I guess it is the “but” in front of “you look good” that makes that feels like you are being dismissive of my experience somehow.
- You sound (or act) like you feel better today. Yes, even when I feel awful, there are times that I laugh and smile and enjoy myself. When you tell me this though, I never know how to react. I often am not feeling any better, so then I have to explain that. Maybe just tell me that it is nice to hear me laugh. Or maybe just let me enjoy the moment.
- You should be glad you don’t have to (work, be out in this heat, listen to that lecture, etc). No, I’m not glad. Trust me, I’d rather be healthy and having to put up with the everyday annoyances of life than going through this.
- I wish I could have a few days to stay at home. Sure you do. When I’m healthy and running myself into the ground, I do too. I often wish for a few days off. However, I’d never wish for this! What I’m going through is not a vacation. Don’t wish for it.
- You must be so bored. Nope. Boredom is when you have energy to spend and can’t find anything interesting to spend it on. I can’t remember the last time I was bored. I’m too busy trying to figure out how to get to the bathroom and back to be bored. Every bit of energy that I have is going into surviving my day. I’m not sitting here wishing for ways to entertain myself.
- This is ridiculous. You should (get a different doctor, try a different medication, etc). There must be (someone/something) that would help. Careful here. I share your frustration, and we all want answers. Casually telling me that I should get a different doctor or try a new medication sometimes feels to me that you don’t think I’m doing enough to get better. Do you know how many doctors, medications, supplements, and alternative treatments I have tried? If you don’t, then maybe don’t say this to me. I’m certainly open to new ideas – just talk with me long enough to get an understanding of what I have tried before you tell me what I should do.
- You should see House. I’ve heard this 300 times. He isn’t real. Trust me; I’m seeing every doctor that I think can help me.
- You’re at (work, school, etc) or having friends over, you must feel better! Not necessarily. On good days, I can medicate and push myself through some things. You aren’t with me an hour later when the medication runs out or when I crash. I know you are looking for any sign that I am feeling better. Trust me, when I feel better, you will know. I won’t keep it a secret.
- Just think positively and it will go away. First of all, you saying this to me suggests that I’m not thinking positively. I actually think that, emotionally, I’ve been handling this pretty well. I’m also very aware of the “mind-behavior-body” connection. Sure, stress makes everything worse and positive thinking can help. However, don’t over-simplify here. I can think about rainbows and butterflies all day, but the room is still spinning.
- I know just what you are going through. I have a few friends who suffer with chronic health issues. Ironically, they have never said this to me. They know enough not to. I do appreciate empathy, and anyone who has had vertigo (even for 10 minutes) does feel like a kindred soul at some level. Still, be careful with your words. Just because you drank too much and the room spun one night doesn’t mean that you know what I am going through.
- Any variation of “All things happen for a reason.” or “God gave you this to teach you a lesson.” I agree that the adversities that we overcome in life are part of what makes us who we are, and I’m all for learning from my experiences. However, when you say things like this to me, it almost comes across as “You deserved this.” Don’t go there.
- What are you doing this weekend? This falls under the category of just not thinking before you speak. I know this is just a typical conversation starter for most people. For me, it just reminds me of all of the things that I cannot do because of my illness. Also, answering, “Trying to get to the bathroom and back just like I do every day” is awkward.
So what should you say? I really have no idea. I know how hard your job (as my friend) is, and I often wonder whether it is harder to be the person who is sick or the person who loves the sick person. I know you’d “fix” me if you could. Humor is good. Laughing always makes me feel better. Tell me what is going on in your life. You aren’t rubbing it in because I can’t do whatever it was you did today – I still want to know about your life. Be understanding when I just don’t have the energy to talk to you on that particular day. Even listening can be too much some days. Just be there. Even if you are saying all of the wrong things…you’re still letting me know that you care. ❤
Anyone with chronic health issues have something to add to this list? Leave a comment below…
Everything above, except for my introduction, is quoted from Allison. If you’d like to share this list, please get her permission, and give her credit. (but you all knew that didn’t you? Visit her at Taking Life for a Spin)