Monday, October 10, 2011

Things NOT to Say to a Person with Chronic Illness

I found the following list on I LOVE this because it's so true!

Things NOT to say to someone with a debilitating chronic illness:

-  but you don't look sick
-  everybody gets tired
-  you're just having a bad day
-  it must be nice not having to go to work
-  I wish I had time to take a nap
-  if you'd get out more
-  you're just getting older
-  if you'd get more exercise
-  it can't be that bad
-  it's all in your head
-  you're just depressed
-  there are people worse off than you
-  you'll just have to tough it out
-  you just need a more positive attitude
-  this too shall pass

I would add two of my own - pull yourself up by your bootstraps and quit feeling sorry for yourself.

I have fibromyalgia. I am not lazy. I do not need to get out more, to exercise, a more positive attitude, or a nap, and it is not nice to not have to go to work. I would love to get out more, to exercise, to be more positive, to be less depressed, to need less rest. I already know there are people who are worse off than me and that I'm getting older. This may or may not pass, depending on whether they find a cure.

I am a spoonie. If you haven't heard of the spoon theory of chronic illness, it goes something like this. Every morning, you are given a certain number of spoons which represent the amount of energy you will have that day. Every thing that you decide to do costs a certain number of spoons and when you have given away all of your spoons, you have to stop. Some days, you get more spoons than others.

I have noticed recently that I get exhausted after doing just one or two (or just a few) things around the house. Justin thinks it's because I've been inactive for so long and I am sure there is some truth to that. But this exhaustion goes beyond just feeling tired because I've overdone it. This feels like the worst flu you ever had and started to recover from - except you never got better. It's that bone deep feeling of being unable to move. And this is getting worse with time, for whatever reason.

I am not a pessimist. I am a realist who has been sick for over 25 years.

I have a great doctor who understands my symptoms and takes care of me. I trust his advice. This is a chronic, debilitating, exhausting, depressing illness that has no cure. My doctor is an expert. If you haven't been to medical school, you are not and your advice is probably only going to make me feel guilty.

I have not given up. I am still getting out of bed every day. I am still thinking I might be able to do something with my writing. I still have a sense of humor and laugh at silly things my friends post on Facebook or say in their blogs. I still save my spoons to do the things I want to do and push myself harder than my body says I should. It's hard to listen to your body when it is making you feel like the laziest person on the planet.

I have fibromyalgia, but it does not have me. It cannot take my spirit or my heart. And it cannot take my hope that they will find a cure in my lifetime. Nothing would make me happier. I do not want to be like this. This is how I have adjusted to be able to live my life.

This list can apply to any other chronic, debilitating illness that anyone is dealing with. Sometimes I think it would be better to have a visible illness, rather than an invisible illness because when people can see your disability, they are less likely to say any of the things on that list. You'd never tell a person with an illness you can see that they are depressed or that they need to get out more. But because I look "fine," it seems to be an invitation for any or all of the above statements. And those statements make me feel worse than I feel already.

I'd like to come up with a list of things that it's okay to say. But I'm not exactly sure what that list would include. Has anyone ever said anything to you that was actually helpful?

Gentle hugs to my chronically ill friends,



  1. I'm sorry to hear that you've had such a hard time, and while i don't fully understand chronic illness, I do face my depression every day. usually, for me, the best thing people can do is not freak out when I make some reference to it, and maybe even laugh at my inappropriate jokes. Jokes help me get through it, and they help me feel a little bit less of a freak.

  2. Marianna,

    Stick around long enough and you'll find out just how snarky and full of humor I actually am.

    Depression is just as much an invisible illness as any other and can affect you just as much. It's a disease of the mind - a chemical imbalance. Something medical! And 1 in 6 Americans is suffering from a mental illness in one form or another.

    I was inspired by the t-shirt I saw on cafepress today that had this list on it and I just elaborated. I tried to do much too much over the weekend and was feeling the overwhelming exhaustion. Of course, no matter how tired I am, there is still insomnia as soon as bedtime rolls around. Our house is just full of fun!

    Thanks for reading.

  3. I love this list, thank you so much for sharing it. Sometimes I also feel that if I had a "visible" illness, that it would make things easier...a friend of mine has a "broken leg" theory...would you ever hear anyone telling someone with a broken leg that it was all in their head? "Oh, you just need to walk on that leg, it would get better". No, you wouldn't hear that.

    Stay strong, you are not alone.
    Blessings, kajal

  4. Kajal,

    I LOVE this idea! Maybe we can all wear casts and use crutches when we go out? Or walk with a cane. Or SOMETHING that shows we truly have a disability.

    I feel guilty about my disability because no one can see it. I feel like I am the laziest person on the planet. But, I wouldn't ever tell someone else to just "walk on it" (so to speak) so I don't know why I beat myself up so badly.

    It's good to know I'm not alone. Invisible illness is really tough.


  5. Thanks for posting your story. Now I will share mine. I have been diagnosed with degenerative arthritis. I do work, but some days it's not easy for me. I have been called lazy as well. Some days I hurt so bad I can hardly get around. I have been told it's in my head and that exercise would help me. Sometimes I can't even sleep at night because it hurts to get comfortable. People need to walk in my shoes for awhile and see how it feels.

  6. I understand somewhat of what you have gone through though my issues were not as severe. I was finally diagnosed with adrenal fatigue, stage 3 (the worst). I found someone who could help me with this diagnosis and have improved greatly over the past 3 months. I, also, take low dose naltrexone and am wondering it this may help with the fibro and the arthritis. There is lots of info and there are several websites devoted to this where you can communicate with others. Good Luck


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