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in Health, Uncategorized · July 24, 2015

How To Help Someone Who Has a Chronic Illness

A question that I get asked a lot is how to help someone who has a chronic illness. There’s only so much that a loved one can do, but a big way to help is by watching how you speak about their illness.

If you have a chronic illness, you’ve probably heard some crazy things. The most common is usually, “Have you tried [insert random natural treatment that will supposedly fix all ills]?” But we have heard plenty of other things, too. I turned to social media to ask what ridiculous things a healthy person has said to us people with chronic illnesses. Whether you laugh, cry, or somewhere in between, I hope that this post is informative to those of you healthy people and makes you spoonies out there feel a little less alone. And, whatever you do, by avoiding saying these things, you will help someone who has chronic illness.

 

How To Help Someone Who Has a Chronic Illness

 

I have included the first names of people who submitted them to me, and I’ve also included their handle/social media network. If you were featured and did not indicate that you want to remain anonymous, but would like to be, just let me know and I’ll change it.

 

  • “Everybody feels pain, Victoria” – Victoria (@povertyluxe on Twitter)
  • “You’re sick again?” – Mommah
  • “Aren’t you tired of always being sick?” – Mommah
  • “How’d you get that” (implying I’m done something wrong in my life to become sick) – Megan (@chronicRAlly on Twitter)
  • “If you take [said supplement] you will be HEALED I PROMISE. It worked for my coworker’s cousin’s husband” – Megan (@chronicRAlly)
  • “These are supposed to be the best years of your life” Thanks. That’s a great thing to say to my former 31 year old dysautonomic self – Melanie Elizabeth (on Twitter @MelBeth_D)
  • “You don’t have arthritis, your energy is just out of alignment” – (@KitSpy on Twitter)
  • “I know what you’re saying about your condition, but I’ve been going all day and haven’t stopped” (Do you have to work with fibro?) – Melanie Elizabeth
  • “‘Well, I take more pills than that every day, so you’ll be fine.’ Yes, grandma, and you’re 73 and I’m 23.” – Natasha (@nrulason on Twitter)
  • “You’re young! It can’t be that bad.” – Natasha @nrulason
  • “Why are you so tired? It’s not like you do anything around here” – Karl Austin (@Porkchop275 on Twitter)
  • “People think it’s so funny to call me a grandma or old because some days I can barely sit without intense pain. Or I’ve had people say it’s impossible that I have arthritis at 29. Right. Ugh!” – Shelby

 

Quotes about Chronic Illness

 

  • “‘Maybe it’s only bad because you’re depressed.’ I said, ‘The only time I get upset is when people say dumb shit like that.'” – Elizabeth April (@elizabethadrina on Twitter)
  • “‘Oh … did you know that it’s curable?’ Um. First off it’s not. Second off don’t diminish my pain and say I could get over it if I tried. Don’t you think I would if I could?” – Amy Jo
  • “My insurance case manager basically told me to be glad I didn’t have cancer as he denied my claim. Helpful.” – Sarah (@sarahsmosaic on Twitter)
  • “When I went vegan, all my symptoms like that went away so clearly you haven’t tried everything.” – @spoonbirb (on Tumblr)
  • “Maybe you should just go to bed earlier” – Ashley (@ohiwannabakecookiesonyourstomach on Tumblr)
  • “My son is chronically ill with arthritis (he was diagnosed at 11). Some days are very painful for him. The comments we have received have ranged from “Maybe he should just exercise and get in shape so he can be stronger” to “My nephew has arthritis, too. His is so much worse. he hurts all over.” For the record – my son hurts all over all the time, too. And, he cannot “get in shape” because we are trying to save his joints as long as possible – he is 21 and they don’t want him to do repetitive things for fear of wearing out his knees, shoulders, etc. The longer we can delay joint replacement the better. I’ve also had someone ask whether his illness is a result of my drug use during pregnancy – I have NEVER used drugs!” – Anonymous
  • “You’re using your pain as an excuse to be lazy, not work, & do nothing around the house.'” – Tamika (@jelover9 on Twitter)
  • “Well my mother has fibro, moves through the pain beautifully, doesn’t complain on social media, & is useful.” – Tamika
  • “One of the most ridiculous thing I’ve been told about my juvenile arthritis (which I’ve had since childhood!) is that my cats (which I had only had for 2 years at the time) were the cause of my illness so I should get rid of them!” – Heather
  • “But you must get some good drugs!! Maybe you could share them <wink wink>?” – Anna (@sixhips on Twitter)
  • “Also told that I was “lucky” I was prescribed Oxycontin for my last surgery… And also that I should sell them” – Anna

 

Quotes about Chronic Illness

 

  • “‘a girl at work has ms & she still manages to show up….’ & ‘at least it’s not cancer’ – Sarah (@SarahFrisonHC on Twitter)
  • “Being at Walmart on one of the motorized carts & a lady said “you might actually need that one day.”” – Bai (@baileeynoel on Twitter)
  • “I think most of them start with ‘well, why can’t you just ….'” – Sarah
  • ” I hear it’s come a long way, or there’s a lot they can do for that now” – Bridget http://brideythebride.blogspot.com/
  • “I was having a good day (yay) and a lady I worked with said ‘you’re very energetic, I thought you were meant to be tired all the time’.” – Beth
  • “Oh, but can’t you just have surgery?” – Hollie
  • “You need to do yoga/move around a lot more than you do/sit as still as possible/have acupuncture/see a chiropractor/see this practitioner/lose weight/try this method of treatment…” – Hollie
  • “A GP (PCP) once told me “young people don’t have more than one thing wrong with them”, so I politely asked him to take a look at my records” – Zoe Clark
  • “Before I was diagnosed one of my GP’s told me fainting was normal, then in the next sentence said it was caused by anxiety, he also told me my joint pain and dislocations were just anxiety… (I have POTS and EDS by the way!)” – Anon
  • “Seeing a specialist about my hands dislocating when I try to do anything she said ‘I cant feel anything wrong. Anyway when there’s this much wrong there’s not much we can do about it’ that’s the point when I realised she had very little idea what she was looking at/ what was happening and asked for a second opinion!” – Anon
  • “I think you are just faking all this to get attention. You look healthy to me.” – Haley

Aren’t these crazy? Thank you to everyone who submitted theirs! And remember: these things hurt the people who heard them, so help someone who has a chronic illness by avoiding these things.

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Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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Comments

  1. Nataile Brown says

    August 1, 2015 at 3:47 am

    Wow, I’ve heard most of these. So sad. Thank-you for publishing this though so I don’t feel like it’s only my family/people around me.

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  2. Katy says

    January 18, 2016 at 9:54 pm

    I’ve heard so many of these. Two more:

    My eighth grade teacher walking my class up from the lunchroom with us huffing and puffing, “you guys are too young to be tired like this.” It was four double-flights of stairs, first of all, and at the time she knew about my condition.

    My *~*DAD*~* with my orthopaedic doctor:

    Dad: Is it because she doesn’t exercise enough?

    Doctor: No.

    Dad: Is it because of her weight?

    Doctor: No.

    Dad: Is it because –

    Doctor: Look, there’s virtually nothing that could have been done to prevent this. She likely doesn’t exercise often because of her disorder, which has likely been with her for years. Intense movement and exercise is uncomfortable and difficult at best, and extremely painful at worst.

    Dad: So it’s because of her weight.

    I could literally almost hear the entire hospital facepalming.

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  3. Shellyyum says

    February 21, 2016 at 3:43 pm

    Mine are simply, that I am making my mental illness up, and that I should just get over it [depression, that is] and that I’m crazy and deserve to be in a mental institute. It’s really horrible that healthy people say these things to me despite not wanting to understand my condition. Mental illness is just as valid as physical ones and I cannot just “get over it” and that it will go away if i pray, because it won’t. It is something that I will have forever. Mental illness should be considered a physical illness because it does affect physically, too.

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  4. Amalia says

    June 21, 2016 at 4:45 pm

    I have chronic daily headaches (constant–I can’t remember the last time I haven’t had a headache, or what that feels like), and I avoid telling people about my headaches because I’m sick of hearing “That’s not normal”, again and again.

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Trackbacks

  1. Is Arthritis a Big Deal? says:
    September 4, 2015 at 8:01 am

    […] month, when I asked for people with chronic illness to share the ridiculous things that healthy people have said to them, the one that I heard over and over again was something along the lines of, “[illness] […]

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  2. Kate the (Almost) Great | Boston Lifestyle Blog - Common Spoonie Conversational Issues + How To Respond - Kate the (Almost) Great | Boston Lifestyle Blog says:
    August 19, 2016 at 8:01 am

    […] what they wished people didn’t say to them. And, well, there was a LOT. (BTW – Don’t say these things to us!) So since you’ll most likely be in a conversation where something like that comes up, […]

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  3. Kate the (Almost) Great | Boston Lifestyle Blog - Don't Say "It Could Be Worse" - Kate the (Almost) Great | Boston Lifestyle Blog says:
    August 18, 2017 at 2:55 pm

    […] year, I asked spoonies to send me quotes of the ridiculous things people have said to them over the years. Several people (at least 5) told me variations of, “It could be worse.” Saying this to […]

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  4. Kate the (Almost) Great | Boston Lifestyle Blog - A Guide to Chronic Illness for Those Who Don't Have One - Kate the (Almost) Great | Boston Lifestyle Blog says:
    December 22, 2017 at 8:01 am

    […] How To Help Someone Who Has a Chronic Illness […]

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On the one hand, you should always believe what pe On the one hand, you should always believe what people tell you about their bodies.⁣
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On the other hand, I’ve had so much ridiculous and unconnected health things happen that I do understand why people might not believe me.⁣
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Last week, I talked about how it surprised me how Last week, I talked about how it surprised me how systemic autoimmune arthritis can be. But something else that surprised me was how much pain can be caused by small things.⁣
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Baker's cysts are a type of cyst in the knee that are generally caused by arthritis. But having a cyst in my knee means that it's causing pressure on that damaged tissue. ⁣
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If I met my newly diagnosed self for coffee ... ⁣
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I tell her how things would get worse before they got better. ⁣
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I'd tell her to stop eating gluten, dairy, corn, soy, and eggs immediately (although that would have been a lot harder in 2010, more than it even is now). ⁣
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I'd tell her that she still needs to keep advocating for herself. ⁣
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I'd tell her that having a diagnosis unfortunately doesn't mean everything automatically falls into place. ⁣
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I'd tell her that she'll develop many more illnesses but her quality of life will actually get significantly better. ⁣
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I'd tell her that she would eventually have to get her right foot fixed, although she does expect that.⁣
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I'd tell her that using a cane is not a sign of failure, but a tool to make life better.⁣
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(I did a sort of tongue-in-cheek post about this a while ago and thought I'd post a more serious one).⁣
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The thing that surprised me the most about autoimm The thing that surprised me the most about autoimmune arthritis is how systemic it is. ⁣
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Like with most things, it's one thing to know the fact and it's something else to experience it. ⁣
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Yes, my joints are affected (a lot). ⁣
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But I've had enough serious infections thats I have to see an immunologist because we need to be aware of my antibodies and I sometimes need help recovering from illnesses. ⁣
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And, yes, I see pulmonology because of my asthma, but we also have to keep an eye out on developing rheumatoid nodules in my lungs. (So far so good!)⁣
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Not to mention that, when I developed POTS, the hospital admitted me to run every heart test to make sure that, at 26, I wasn't experiencing heart failure. ⁣
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Plus, when I developed endometriosis, I also went through a number of GI tests because one theory was that I had ulcerative colitis. ⁣
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Anyway, RA is so much more than "just" joints. If it wasn't, I wouldn't have to kill my immune system every 3 months like I am in this picture.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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