When you have a chronic illness you tend to get the same reactions from people over and over again. As much as you try to remember that most people have good intentions being regularly put into a position where you have to defend your illness is exasperating. Here are some suggestions for what not to say to someone with chronic illness:
- Saying things like, “But you don’t look sick”!
It’s really nice of you to say that I look good, but I have an invisible illness. You can’t see my pain, but believe me it is there. On a regular day I’m in more pain than most people could ever imagine, but I’m very good at hiding it. If you look closely you will notice that I hold my body in a different way than most people. You may notice the lines of tension if I’m trying to keep the pain at bay. You may notice that I’m especially quiet. You may notice that underneath my makeup I am pale and have huge circles under my eyes. You may notice that I’ve gained some weight lately, because I’ve been in too much pain to exercise and my body is too messed up to regulate correctly. You may notice that I seem spaced out, and that’s because I had to take pain medication that day.
The signs are there. Even if they are not visible immediately. The more you spend time with me, the more you will notice. My invisible illness will become more visible to you.
2. Offering suggestions on potential cures
Please don’t offer me unsolicited advice about curing my illness. There is not a magic cure out there for me, and you need to accept that. While I appreciate that you thought of me, I have spent a lot of time and a lot of money investigating different products that might ease my pain or help fix my body. I have had very little success. The thing is if your potential cure actually worked I would know about it, and so would everyone else. I like MLMs and having my friends shake me down for money as much as the next person (that is to say, not at all), but I’m fairly confident that if a shake could cure chronic illness it would be front page news. So please don’t add me to your sale groups or send me a message telling me how a certain product changed your life.
3. Telling sick people how inspirational they are
I am not your inspiration. There is nothing about my illness that is awesome and inspiring. I am not special. I’m a normal person who was dealt a crappy hand and is just trying to find a way to live my life. I am not an object to be admired. I am not accomplished just because I’m alive, I’m accomplished because I am me. I’ve always been awesome, chronic illness hasn’t changed that.
4. Saying, “But if you have faith you can be healed.”
Faith is not a cure for chronic illness. Bad things happen to good people for no reason all the time. That is called life, and whether you have faith or not has little influence on the outcome. There are many good things that come from faith, but miraculous cures are rarely one of them.
5. Suggesting that if I just try harder or think positive I’ll get better
On one hand, I’m glad you still think this is true because it means you haven’t had a lot of difficult things happen in your life. On the other hand this gets old fairly quickly. Putting in extra effort doesn’t make me feel better, it actually makes me feel worse. The more I push myself the sicker I get. However, if I pace myself and follow a schedule I know my body can handle I can generally function well. So please honor the boundaries I have set because they are there for a reason.
I love your writing and I love your points too. Although I’ve reached the point where if someone says “you don’t look sick” I just say “you don’t look stupid” and move on. Ain’t nobody got time for that. (Especially when you’re sick).
Thanks Ava! Yeah, I don’t have time for the “you don’t look sick” thing anymore. I don’t know what they expect sick to even look like.
Absolutely hilarious!! I REALLY abhor all of the “miracle pill” suggestions (by way of network marketing plans).
Ava, I’ll have to remember that one!
I have fibromyalgia and chronic fatigue and a few other issues. I have a sister who has such good intentions about how to deal with fibromyalgia. I appreciate it so much but unless you are in it you do not understand. (I do not say that to her). She has gone thru a horrible bout of cancer stage 4 so I know that she is coming at this with all the best intentions.
There are others though who do not believe me and think that I just do not want to join in on the fun or the event. They think that I need to get out of my head and just think a different way.
I hate it when people think getting out of your head can fix everything. While distracting myself works for a little while, it still doesn’t fix my health.
Ugh, right on about the whole “inspirational” speech people give us. Stop it already!