Top 10 Things NOT to Say to Someone Living with Chronic Pain

By Melinda Malott

I came of age during the Letterman years. I was working as a registered nurse on the 3-11 shift and I would come home just in time for Dave’s top ten list. Most of them left me howling and helped dissolve any leftover stress from the evening shift.

Did I ever think I would be penning my own top 10 list? Of course not! Did I ever think I would be the “patient” for an extended period of time? No way! So it’s with a bittersweet well of emotion that I pen this list.

Take this list and print it and give it to your friends and family; get it posted in
newsletters, bulletins or any place
that might catch someone’s eye.

[Click the image below to enlarge, right click and “Save Image As” to download to your system.]

I’m not a particularly overdramatic or oversensitive kind of girl, but honestly the things that have been said to me over the past eight years in regard to my illness (CFIDS/fibromyalgia) have blown me away. Honestly, people don’t think. I know that some people just don’t know what to say, so they fumble and sometimes a gold nugget emerges, but mostly a lump of coal.

So with that said here is my top ten list (thanks David Letterman) of things NOT to say to someone with chronic pain.


10. You look great! In days gone by that was music to my ears and it still is. What woman doesn’t want to hear that she looks great? The key here is when that statement is accompanied with an inflection in the voice that whispers to the recipient, “so, therefore you must feel great.” NOT! So telling me I look great is fine, but please leave the inference off. Just pay me a compliment, period. Read this statement aloud placing accent or emphasis on the words “you” and “great.” You look great! I’ll take that compliment and say “thank you.” You look great? It’s the emphasis on look combined with the question mark on the end that suggests to me that you think I look great, so therefore I must feel great.

Your question mark makes me feel
like you don’t believe that I am sick
and in pain or that I am being
dishonest about how I feel.

I am a wizard with my Mary Kay makeup brushes and am very skilled at online shopping. I can make myself look like the Queen of Sheeba when I need to present in public. When you see me looking that great you have no idea that I have spent the entire day in bed just so I could be rested enough to get ready and make my appearance.
beautiful princess with diamond crown
9. I know exactly how you feel. I am sorry, but you have no clue how I feel. There are no two cases of chronic illnesses that are completely alike, whether it is fibromyalgia, diabetes or arthritis. You are not in my shoes; you don’t know what I’m dealing with in my personal life and you don’t share my life experiences that have molded me into the unique individual I have become, so you really don’t know how I feel.

8. It could be a lot worse. Yes, I suppose there are worse things that could have happened to me, but I have suffered a huge loss. I had to give up my career that I was passionate about. I am unable to take a walk with my children and I have been robbed of my spontaneity. There are days I feel so bad I have thought I must be dying. So this statement really takes a stab at minimizing a horrific illness.

7. At least you don’t have cancer. I agree that cancer is a dreaded diagnosis that nobody wants to have, but really there is finality to the cancer. The cancer can be removed and you receive treatments and move on. In most cases after a period of time you return to a condition close to the pre-cancer state. The other very sad reality is that you can die from it. Death is the end to it. With chronic pain there is no surgery, no treatment, no finality and no threat of impending death, so it stays with you. So, while I don’t want cancer, there are some days I wish that it was a lump that could be removed and five months from now I could return to work and working out and doing all the things I used to do. I can’t. I do empathize with cancer patients and we do share some commonalities such as pain, anxiety, and fear of the unknown.

I try to focus on what I can do
and not on what I can’t do…

6. God won’t give you more than you can handle. I am a Christian and I strongly believe in God. The God of my understanding is a loving God. He is NOT in heaven waving a wand attempting to push me over the edge. Seriously! Who wants to believe in a God that is like that?

5. It’s good to see you here; you must be doing better. Just stop at “Its good to see you.” I am not necessarily doing better. I could be having a really bad day and I felt like a distraction and diversion would be helpful.

4. Don’t say “my” illness. I have used the words “my illness” when referring to the illness I have. I do not own it. I don’t get some sick satisfaction out of being chronically ill, and by saying “my illness” I am not going to prolong it. But I have had people stop me when I refer to my illness and tell me that by saying it’s mine, I own it. Really? You can have full ownership if you want to, but I will give it away for free.

3. At least you can… At least I can what? Don’t minimize my loss. You have no idea. I try to focus on what I can do and not on what I can’t do, but there is a lot I can’t do anymore and it stinks.

2. You don’t look sick. When I hear this my mind plays a little ditty, “liar liar pants on fire.” Yes, I am sick and I’m not milking the system and I’m not lazy.

Yes, I am sick and I’m not milking the system and I’m not lazy.

1. You need to get out more. The sunshine and fresh air will do you good. Do you think I want to be housebound as much as I am? You are looking at Miss Social Butterfly of America. I hate being stuck at home and I hate missing out on events with lots of people. And why is it you think sunshine will help me? Are you suggesting that I am depressed? That is what I hear in that statement. If I thought sunshine would cure me I would move south in a heartbeat. Sunshine is wonderful, but suggesting I need to get out more just demonstrates your lack of knowledge about my illness, and yes I said my illness.

About the Author:
Melinda Malott has a Bachelor’s degree in nursing and a Master’s degree in health education. She recently published a children’s book, How Many Marbles Do YOU Have?, a book used to help children and families conceptualize energy limits for someone with CFIDS and fibromyalgia, using a jar and some marbles. She retired from nursing in 2009 due to CFIDS and fibromyalgia.