What not to say to someone with a chronic illness #blogboost

 

 

 

 

 

 

 

 

 

 

 

Found this on another blog and couldn’t wait to share!

When people would say these things to me, it would drive me nuts.  I just wanted to scream everytime someone said one of these sayings to me. 

  • BUT YOU DON’T LOOK SICK: Because Fibromyalgia is an invisible illness, I am never going to look sick.  Fibromyalgia is pain throughout your whole body, so maybe I should look like I am in pain so people know I don’t feel well. 
  • EVERYBODY GETS TIREDYes everyone gets tired, but people with Fibromayalgia.  I can get 8-9 hours of sleep and still wake up feeling like I got none. 
  • YOU’RE JUST HAVING A BAD DAY: When you have Fibromyalgia, especially when I have a flare up, everyday is a bad day.  But, I can’t let it be because I have a 10 month old to take care of.
  • IT MUST BE NICE NOT HAVING TO GO TO WORK: I still work, thank God, I just work from home.  That is great because I can work from bed if I am having a bad day and I can stay in my pj’s and no one knows.
  • I WISH I HAD TIME TO TAKE A NAP: so do I.  I haven’t taken a nap in a very long time – since I was pregnant.
  • IF YOU’DGET OUT MORE: that is so hard because I just don’t have the energy sometimes to get dressed and get Mikey ready to go out.  Espcially in the winter time.  Hopefully now that it is getting warmer, we can go for walks.
  • YOU’RE JUST GETTING OLDER: LOL I am only 34 years old but some days I feel like I am 70.
  • IF YOU’D GET MORE EXERCISE: I wish I could, but I just don’t have the energy.
  • IT CAN’T BE THAT BAD: I wish people could see me on the bad days when my husband has to help me shower or walk with me to the bathroom because I am in soo much pain.
  • IT’S ALL IN YOUR HEAD: I just don’t even know how to respond to that.
  • YOU’RE JUST DEPRESED: I know when I have a flare up, I do get depressed.  I feel sorry for myself and think I am a bad mother and wife because I can’t do anything.
  • THERE ARE PEOPLE WORSE OFF THAN YOU: I totally agree.  There are people dying from cancer everyday.
  • YOU’LL JUST HAVE TO TOUGH IT OUT: I mostly do except for those bad flare ups.  I have a 10 month old I have to take care of, as well as 2 cats, 2 businesses and a household.
  • YOU JUST NEED A MORE POSITIVE ATTITUDE: I try too on those bad days but because I am in so much pain, it is so hard to stay positive.
  • THIS TOO SHALL PASS: I wish it would.  I do have to say though, ever since having Mikey, my Fibromaylgia has been better.  My flare ups don’t last as long and I am not in that much pain every day.

About Michelle Arbore

I am 36 years old, married for 8 years and have an almost 3 year old, Michael Richard. We also have two cats (Anibel & Mama). I own my own social media management and coaching business that allows me to work from home. I like to read, listen to music, take photos, learn new things, shop, watch TV and spend time with family and friends. I also suffer from Fibromyalgia. I have suffered from this disease for over 15 years now. I started my blog so I could have a place to vent about what I am feeling. It has turned into a place where I post information about this disease, talk about books that I am reading about Fibro, and getting to meet other people who suffer from this.
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19 Responses to What not to say to someone with a chronic illness #blogboost

  1. Alicja says:

    The worst part is the constant feeling of fatigue, sleep for a long time but you can not sleep

  2. Pingback: Worth a second look #blogboost

  3. MzVenus says:

    I have Sickle Cell disease and I’ve heard most of these…and WORSE! The most infuriating & hurtful thing I have heard is: “What’s the big deal? It’s not like you have cancer or anything.” I think it’s a good thing that I was stunned speechless & immobile because I probably would’ve gotten arrested for assault & battery at the least, attempted murder at the worst!!!! I’m in the hospital now as I type this. A good year is for me is being hospitalized maybe 3 times out of a year, but during one of my worst years, I spent a collective 7mos in the hospital. I’ve had one too many close calls w/ death and out of 365 days in a year, I am in pain for about 350 of those. I have had both of my shoulders & my right hip replaced because the bones died from poor blood supply and I am in iron overload from too many blood transfusions. With too much iron comes more organ damage. I could write a book about this. I have lost MANY FRIENDS & MY OWN BROTHER TO THIS HORRIBLE, TERRORIZING DISEASE!!! So to be told something like that is a slap in the face and it tramples the memories of those that I’ve lost. Not to mention every other person who lost their battles with Sickle Cell Disease. People need to let go of ignorance and grab ahold of some education. This is NO picnic!!!

  4. Alana ( says:

    I wanted you to know (2nd comment on this post) I pinned this on my Pinterest board, and it has gotten 40 repins (so far) and some very touching comments. My Mom passed many years ago and I think this philosophy would have been hers also. Thank you so much for sharing.

  5. maddy says:

    hiya, i no just how you feel!
    im very new to all this! i was diagnosed with fibro last sept and in the process of seeing a CFS specialist, everyday i feel is a struggle just 2even put my feet outside of the bed!
    i have 2children both under five and i find it extremely hard 2cope with all thats goin on with my illness and still be the mum im supposed 2be.
    i try and push myself so i can still play with my babies and not let my illness come between me and my family.
    i have had M.E in my life since i was born as my mum became ill with it while she was pregnant with me and my sister also has fibro.
    i have found friends not to be of any real help because they just dont understand what i have and how it actually makes me feel.
    i have been diagnosed with severe depression infact im on the border line of having a nervous break down, i dont feel like my head or my body can take much more of this and to have people not believe you makes it all that much worse!

    i wish you all the best!! xx

    • Hi Maddy. It took a while for my family and friends to come around. Don’t get me wrong, there are still soem family members who don’t want to understand it and I have lost some friends because of this. They got tired of me canceling things because I didn’t feel good. Things happen for a reason and I know now they were just bringing me down. Hang in there. Have you look at support groups where you live? Maybe that can help you.

  6. Diana says:

    I’ve had fibromyalgia and chronic fatigue syndrome for over 20 years. I’ve had variations on all those things said to me. I’ve tried the exercise, pushing myself with gritted teeth, until I burned and crashed. I also worked (as a registered nurse) again with gritted teeth. Got sicker and sicker. I had to quit. I have not worked for about 2 1/2 years now. I have had to start from square on, gentle exercise (ie a five minute round trip walk, not much more than a stroll.) But I don’t have a child to care for. I hear you about getting dressed. Some days I get dressed in stages, taking about two hours to get fully dressed.

    I actually have a pretty positive outlook. I trust God for each day.

    I will keep you, Michelle, in my prayers, and also the ones who commented here.
    Diana

  7. Shelley Webb says:

    Excellent article. Having been a registered nurse for over 30 years, I can’t agree with you more. I believe that sometimes people just don’t know WHAT to say and they want to so badly to say something comforting that it just comes out the wrong way.
    Perhaps you could write an article on things that people COULD say that might help, because most people have no experience with the horrid nature of chronic illness.
    I wish you more good days,
    Shelley

  8. I have heard all of those so many times over the years. I don’t have fibromyalgia, but I have another invisible illness. I have Charcot Marie Tooth Disease and I walk, talk, and function mostly like the average person, but I am weaker. I have nerve issues and I am constantly in pain. I don’t ask for sympathy, but I hate when people say those things to me because they just don’t understand.

  9. Mathea says:

    You know, sometimes you just have to speak the truth, right? People say to me about migraines – oh, I get headaches too… Not the same. I found the best thing you can do is say “I can’t say I know how you feel because I don’t, but I am sorry that you are hurting and is there anything I can do to help?”

  10. Alana ( says:

    My Mom had rheumatoid arthritis; diagnosed back in the 1960′s before there was treatment. As a child, I saw some of what she went through – I never forgot it. Nor did I ever forget the sometimes rude and worse things people said to her I will be sharing this on my facebook page and also tweeting it.

    • Thank you Alana for commenting and sharing. I have heard all of these before and after a while they get on your nerves. And if someone doesn’t say it, you know they are thinking about it.

  11. A thousand wishes to get even better!
    My illness (de-myelinosis) has not manifested yet, except for a couple of relapses, so I can’t say that I’m on the same boat — although I feel a certain apprehension for the day when it may decide to take an upper hand.
    No, they don’t get it ;)

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