Articles, Blog

What Not to Say To Someone with An Invisible Illness

December 11, 2019


Invisible illness can be lonely and when you
hear some of these comments it can feel like you are the only one experiencing them. We
hope this video encourages those who live with invisible illness to understand–you
are not alone. If you are not ill, we thank you for listening. Thank you for caring enough
to be informed. it must be nice to just lay around and not
have to go work. They say most illness is caused by stress. It’s all genetics. Someone in your family
gave this to you, you just need to figure out who. I’m really worried about you. I wonder if
you are identifying too much with this disease. The weather effects you. geez, you’re as bad
as my grandma. It is great to see you out. You must be feeling
10 times better. you know those doctors really know how to
cure it. They just want to make money off of you. My cousin had cancer last year. You should
count your blessings. At least it’s not fatal. I mean, it’s not
like you are going to die from it. You are having MORE tests done? It seems like
there is always something wrong with you. You take HOW many pills? That would kill me! You always cancel on me. It’s like you WANT
to be sick. When are you going to like, get over all this? You just went to the bathroom. I know I probably shouldn’t say this but… If I complained as much as you my husband
would never come home. You need to fight this. You are just giving
in and accepting it so now you will never get better. You are so lucky too get this while you are
young, There is so much cool research out there. Dude, don’t be a wimp. Be a man and help me
move this weekend. I promise to let you carry the little boxes. I thought only women got that disease! What’s
with you? Well, if you don’t want to try my suggestion,
you must not really want to get well. If I was that sick I would try anything. What happened to that magnetic bracelet I
bought you? You promised you would wear it! You are way to young to have this many health
problems. That celebrity tried some drug for your disease.
Maybe you should try it. He is fine now. You’re depressed. You need to get out of the
house more. C’mon. It will be good for you to get out
for while. Oh, I knew someone with that disease. He’s
dead now. Everything is going to be fine. you are just
a worrier and it is making your body rebel. I know it’s kind of a personal thing but have
you thought about losing some weight? A few bites aren’t going to hurt you. don’t
be so vigalante about it. I could NEVER take pain pills like you do.
I just choose to tough it out. You know my dog has arthritis and now I give
him tumeric and he runs around like a puppy. Don’t you ever get tired of seeing those little
ribbon things. How many causes can a girl belong to? You’ve changed. You know, I miss the old you. Don’t take this
the wrong way or anything, but you used to be a lot more fun to hang out with. Once you use that wheelchair you will never
want to get back out. You blog about your illness? What on earth
do you have to say? I’m still sick? Have you thought about seeing a psychiatrist?
I’m just sayin’. You have another doctors appointment? Geez, it’s like you’re a little lab rat. How on earth do you think you can have a baby?
You can barely take care of yourself. Why do you want a degree so bad if you won’t
even be able to work? You don’t know chronic fatigue until you have
chased a two-year-old around all day. It’s not really healthy for your kids to hear
you whining all the time. But God doesn’t want us to suffer! Stop being
such a martyr! My sister’s boyfriend’s mom had that and she
started taking this vitamins and all the symptoms just went away. You should try that. You’re sick again? You’re cancelling? You felt good enough to
go to the store yesterday. Well, look you fine. Nice shoes… “grandma” It is not that far to walk, only a few blocks.
You’ll be fine. You just have to push through the pain if
you want a life. Hey, can we use your blue parking permit?
I always wanted to do that! I know just how you feel. Whatever doesn’t make you stronger is just
going to kill you. I mean. . . Yeah. You’ll be stronger.

60 Comments

  • Reply HulaGR September 2, 2013 at 3:04 am

    "you are wearing too many clothes, it's hot outside!"

    no one can understand how fragile your body is. Even your own parents…

    [CHD PATIENT]

  • Reply Carolan Ivey September 6, 2013 at 1:46 pm

    I've heard so many of these in my almost 50-year battle with RA.

  • Reply Carolan Ivey September 6, 2013 at 1:47 pm

    [[hugs]] I have some tinnitus in one ear that comes and goes. I can only imagine how hard it must be to deal with it all the time.

  • Reply Aleah September 8, 2013 at 6:11 pm

    Thank you!

  • Reply D Ontiveros September 8, 2013 at 7:33 pm

    I LOVE THIS VIDEO! HAVING MS,RA,SPINAL DAMAGE AND LEGALLY BLIND I'VE HEARD SO MANY HAVE THESE THINGS FROM FAMILY AND FRIENDS.

  • Reply Meredith Heffernan September 12, 2013 at 7:00 pm

    I'm pretty sure I have chronic fatigue or something (there aren't any doctors in my area that would ever diagnose it) and I'm afraid to bring stuff up to my husband or especially my mother. My brother was burned as a baby and has always had very visible symptoms. When something happens to me, I just get dirty looks for having too many problems or for not doing enough.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:38 pm

    so glad it helps you know you aren't alone, sweetie!

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:38 pm

    Wow~ 50 years! I have had it 20. My heart goes out to you and you give me hope to keep on keeping on.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:39 pm

    I am so sorry this is what you are going through. I don't know of your beliefs, but it may help to be surrounded by others who believe you over at Rest Ministries. You're invited 🙂

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:39 pm

    thanks for commenting! It helps to know it touches people

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:39 pm

    thanks for commenting! It helps to know it makes a difference

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:40 pm

    no, he was saying "YOU have a blog?" about all the people who blog about their illnesses. I hired him 🙂 Don't ya love him tho?

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:40 pm

    I hired them. sorry, I don't know their blogs or if they even have blogs.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:41 pm

    yep, pets are the greatest.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:41 pm

    thanks for commenting and sharing, Evie!

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:41 pm

    I know people with that and it is soooo hard. My heart goes out to you.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:42 pm

    Hang in there. It's awful when you hear it but we hope now you think, "hey, that belonged in that video" rather than hurting alone.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:42 pm

    yeah, about a million times. it's not listening, huh? me too

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:43 pm

    You are so very welcome! it's great to know it's encouraging

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:43 pm

    thanks, Jenn. sorry it brought tears, but hopefully they were cleansing. thanks for sharing it.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:43 pm

    thank you for commenting. Yep, there is a long list of the comments we hear, huh? Sorry you have been on the receiving end of them too many times.

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:44 pm

    Thank you, Rich! Hoping it opens the eyes of those who think illness is a choice, Bless you, Lisa

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:44 pm

    working on it! 🙂

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:45 pm

    thanks! Hoping it was a blessing to know you are not alone

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:45 pm

    thanks for sharing it Kristina, it's been having a great impact and I appreciate you being a part of that

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:45 pm

    Thank you! Appreciate the encouragement to keep on keeping on

  • Reply Rest Ministries Illness Support September 12, 2013 at 9:46 pm

    so sorry you are in hospice. Praying you can heal and outshine all the expectations!

  • Reply Carolan Ivey September 12, 2013 at 10:48 pm

    Hey, it's all good. 🙂 Thank God I've always had insurance and access to treatment and surgeries. I've been incredibly lucky in so many ways. Every birthday that passes that I'm still on my feet is another year I can give "the finger" to his disease. 😉

  • Reply 97jenn September 13, 2013 at 6:09 am

    It did, actually. I shared it so other people can realize what not to say. It's one of the best videos I've seen on the subject. A big thank you to everyone who made it, as well as to everyone who helped spread information during this past week.

  • Reply jd450lh September 13, 2013 at 8:21 pm

    Thanks for the kinds words and the prayers…they are greatly appreciated.

    God Bless,
    Jeff 🙂

  • Reply Meredith Heffernan September 16, 2013 at 6:48 pm

    Thank you so much. I had never heard of rest ministries until now. I am a Christian, so this would be an amazing resource.

  • Reply Anni M September 17, 2013 at 11:07 am

    Why not? People would really benefit. Do they think it's self promotion?
    Anyway, this was brilliant–I'm sharing it around (and found it on the Lupus page in FB) Thank you!
    anni m

  • Reply Chronically Hopeful September 26, 2013 at 3:46 pm

    Great video. I will definitely be sharing this! 😀

  • Reply karlsie October 20, 2013 at 11:58 am

    omg.. most of these statements have been said to me by medical professionals.

  • Reply SentByHim October 20, 2013 at 11:43 pm

    so true…its even worse when its something rare that they have no freakin clue about

  • Reply Debbie Brooks Riffel January 1, 2014 at 8:01 pm

    Wonderful and another one I get and just got already this year is "I work, I have too".  

  • Reply Brenna Bentley January 29, 2014 at 4:05 pm

    I have chronic mono which has caused a multitude of other problems… the biggest one is still the fatigue though. I love when people try to tell me sleeping THAT much is unhealthy and that it's in my head. 

  • Reply Nicole Collins February 1, 2014 at 4:55 pm

    A guy I was dating told me that I need to get that meaning tumors taken care of.  Yea like it's that easy.  Often times the people that I'm friends with find out that I have Nf (tumors that grow on nerves and on under the skin) always tell me that I look so normal.  I just know how to hide these tumors so that I'll look "normal" lol

  • Reply Friendly Chops February 5, 2014 at 7:23 am

    I have Pseudo Tumour Cerebri (IIH) , ended a career I loved, my most common comment is "it's just a head ache" lol, my cerebral pressure is so high it crushes my brain and pushes my eyes out of the sockets.

  • Reply Stephanie Welch March 10, 2014 at 2:16 pm

    This is perfect!!!! Exactly what I hear constantly !!

  • Reply Myositis Support and Understanding May 22, 2014 at 9:33 am

    We, living with #myositis , which for some can be an invisible illness, have heard so many of the things in this video.  We know some mean well and some just do not understand. Spreading awareness through a video such as this will hopefully help others understand. #invisibleillness #chronicillness #chronicpain  

  • Reply Everette L Rice June 7, 2014 at 6:09 pm

    Well done and right on target, thanks for producing this video. So very true! er

  • Reply Christine Draper August 29, 2014 at 4:34 pm

    Have heard it all and throw in  " you must have a sin issue in your life you are not dealing with " or "If you really believed you would have been healed".  But I have also been blessed to have heard (by people who know me) that watching my life and faith has been an encouragement so it all balances out in the end!

  • Reply MustacheDuctTape September 10, 2014 at 12:59 am

    "Just pray about it, you'll be fine." or "Maybe moving around will help you feel better." or "Sit up, being curled up like that is bad for your back." GP/VNS/Endometriosis person here. I get a lot of these in this video, some even from my own mother, who went through all the testing with me. If only more people understood what it's like to actually have invisible illnesses and disorders, the social aspect of everything is one huge part that not a lot of awareness is brought to..

  • Reply Kitchen Witch October 29, 2014 at 3:03 am

    Great, Goddess – Thank You for posting this!  I get so many of these, and it's exhausting having to traverse the mine-field of able-bodied people's expectations and beliefs – strangers included.  So freaking many of those comments ring true to me… have been hearing them for 20+ years.  I have CFS/ME, Fibro, Osteo-A, plus Multiple Chemical Sensitivites, Cognitive Dysfunction and the Mental Health stuff like Major Depressive and Agoraphobia et al.  I love when I am Able to be outside, and share the sidewalk with another dis/Abled stranger or Elder and we share that "look" and smile.

    Able-bodied folk seem to believe that when it's an invisible illness, a "positive" outlook will magickally cure us.  Obviously that doesn't work, as we're all still here, all still fighting and still dis/Abled as Helle.  As it is, I wouldn't have survived this long if I DIDN'T have a positive outlook.  Being dis/Abled taught me the valuable lesson of appreciating every tiny, little thing – even if it's just having my own bed and a roof over my head… or being Able enough to actually prepare myself a meal… conquer the !#%$! damn shower… do dishes and other menial tasks, craft and make artwork…  Sit at the computer, regardless of the pain or fatigue.  How many of these folks have times when they are fighting back tears while in the shower/tub?

    The most frustrating thing is when I am having a good day and ALREADY DOING whatever that allows me to do.  Recently, I was walking the terrible distance to the local Library to vote (but oh! that Sun on your face!) and had a young, able-bodied friend with me.  Every time my legs/body were "done" and I stopped to rest so that I COULD make it the whole way, they said "you can do it, just push a little further" and "just believe in yourself".  It came from a caring and well-meaning place…  But It Doesn't Work Like That.  NOT resting or recuperating causes us further damage and has real-life consequences.  I'd like to make it BACK from voting, Thank You Very Much.  We know our bodies and we are already pushing ourselves or we wouldn't still be here, even the most debilitated of us (and Love to you).

    Sorry for the wall of text to all the other brains out there equally as hurty!  Peace.

  • Reply Deanna Brownlee November 24, 2014 at 6:51 am

    I have also heard "It would help if you exercise!" and "You need to drink more water," and "You just need more Vitamin B!" and "It's mind over matter!" and so many more. I  mean honestly, people. We're struggling as it is. Don't be a bunch of assholes and make it worse.

  • Reply Barbi T January 30, 2015 at 9:37 pm

    shared via Google

  • Reply Sydney Thomas March 26, 2015 at 7:15 am

    It would be nice to see a video about the best things to say to a person with an invisible illness. I recently shared this on Facebook and some of my family got angry with me because they thought that a lot of these were legit things that I need to hear.

  • Reply ElizaUK Samad December 6, 2015 at 5:35 pm

    thank you for share this video, I'm suffering with complex diagnosed ID of musculoskeletal osteoarthritis with chronic pain fatigue, difficulty on mobility due to hip impingement since 2004, my world around me has chanced so much, work environment very hostile towards me as my lims don't show disability (all under clothes) due to that been a victim of harassment/bulling. I've become so lonely in my professional life.

  • Reply Shelby Smith January 11, 2016 at 7:43 am

    thank you for this. in the past 3 weeks i was diagnosed with ulcerative colitis, rheumatoid arthritis, and lupus. Im a freshman in college and i had to withdraw due to my health. im afraid of losing my job because im always sick. its definatly been rough. its nice to know im not alone!

  • Reply Julie Ryan February 14, 2017 at 3:03 am

    Is this a Christian organisation?? Cool if it is ?

  • Reply Jack K March 8, 2017 at 8:36 pm

    Whatever happened to "You should just smoke some p#t" 😀

  • Reply Rex Givens May 3, 2017 at 1:32 pm

    My mum loves to say "yogo will fix everything"

  • Reply I gotboredbutcouldntthinkofagoodname July 25, 2017 at 8:16 am

    my personal fav. is ' positive thinking'…and 'Big Pharma have the cure…'

  • Reply Orchids n Lyme February 26, 2018 at 9:40 pm

    Thank you I hear this all the time?!!! The one that bugs me the most is " your look great, you must be feeling better" ? then they just walk away! Its like well..it took me 3 hours to get ready and now I'm ready to fall asleep im so exhausted! Or " its just the weather "

  • Reply My Hodgepodge Life! April 12, 2018 at 12:24 am

    Yea..the doc in er said..oh these flare ups are just a little inflamation!
    I love this video

  • Reply Dani Maru June 14, 2018 at 8:04 pm

    It's sad that my mom says a lot of these things.

  • Reply Dani Maru June 14, 2018 at 8:08 pm

    Everyday i always hear these things from either a family member, a friend, even teachers sometimes

  • Reply Eyes on the prize July 22, 2018 at 3:45 am

    I don't recall anyone saying things like that to me in the 30 years I've been dealing with __ if they did, evidently they were not important!

  • Reply Eyes on the prize July 22, 2018 at 3:47 am

    Oh & frankly I'd either ignore.them or outright tell them how STUPID.THEY ARE & MOVE ON.

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