5 Things You Should Avoid Saying to Someone with a Chronic Illness

5 Things You Should Avoid Saying to Someone with a Chronic Illness
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After having multiple sclerosis for six years, I’ve decided there are five things “healthy” people might not understand about the disease, and it really drives me crazy. 

So, I’ve compiled some common misconceptions and advice to help spread awareness among those who aren’t familiar with MS.

1. Remember, it is a fluctuating condition. 

Last July, I ran a total of 51.5 miles! Does this mean I’m cured? Nope! Does it mean I’m faking my condition? Gosh, no, it was excruciating doing that much running. But I had to prove it to myself and show others it could be done if I put my mind to it. 

But if I announce on social media my achievement of running 6 miles, it doesn’t mean I can go out for dinner with you that evening or drive you somewhere after I’ve been running. It also doesn’t necessarily mean I can do things with you the next day. Please don’t get annoyed at me for this; I’m just trying to live the best I can. 

I love this column from the “MSunderstood Millennial,”  Stephanie Towler, who interviewed her parents to see how much they knew about MS.

2. Please understand that I must make allowances.

If I choose to go out with you one night, please understand that I must take that day off to save energy. I also must take the next day off to recover. 

If I turn you down and say I don’t have time to go out with you, it’s because one night for you actually means two days for me, and I have stuff to do, too. 

3. Be mindful of what you say to me. 

As someone with a chronic health condition, please note that I may find some things you say frustrating.

For example, if you ask how I am, and when I respond, you say, “I’m tired, too,” I might feel annoyed. Your level of fatigue is much different than mine. People with chronic illnesses want to feel understood, even if you don’t understand entirely. Try to answer with, “I can’t begin to imagine how fatigued you are. I hope you feel better soon.”

4. Don’t assume without asking that I can’t do things. 

This one drives me crazy. Sometimes people assume things about me without even asking.

They may take the illness at face value and say things such as, “Oh no, don’t worry about moving that chair. I’ll find someone else to help me.” And I may feel perfectly well at the time. Or, “I didn’t ask you to come shopping with us for party outfits because you’d be too tired.”

Just because I struggled to have the energy to walk around a shopping mall once or had weak arms doesn’t mean I can never go shopping or lift a plastic chair. Please see point No. 1: My condition fluctuates. 

I need to be in charge of what I can and can’t do. If I feel I can’t do something, I will let you know. People with chronic illnesses can have good days, too, so just ask.

I recently planned my best friend’s hen party (bachelorette party). That meant coordinating a weekend of activities for 10 other ladies I’d never met. Somehow, I pulled it off. You can read about that experience here.

5. Avoid the dreaded ‘miracle cure’ recommendation.

One thing that drives people with chronic illnesses nuts is when “healthy” people suggest “miracle cures.” Such as: “I know so-and-so had MS, and they took a bath in rose petals with special essential oils imported from Mexico and their MS cleared up and went away!” Or, “This person I know started eating avocados every day and took this supplement, and now they don’t have MS!”

“Wow, good for them!” I reply.

What are we supposed to say in these situations? Do people really believe that if there were a cure, we wouldn’t know? 

I hope you have enjoyed these five things that can be irritating to hear. A little more awareness goes a long way.

What have people said to you that you’ve found annoying? Please share in the comments below. 

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

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31 comments

  1. Suzanne L Nielsen says:

    The one thing that drives me nuts is when people say you are looking good. Having MS doesn’t mean I look any different other than I am in a wheelchair. It seems like people feel that because you have a disease that you should look sick and that is not at all what this disease is.

    • Someone asks “How are you?” Because that’s how people greet others. I reply, “OK. or good.” Which doesn’t mean I am. I don’t want to list how I’m not OK. What are some good responses without sounding like self pity or complaining?

      • Christopher says:

        Hi JoEllen.

        I usually say, “some days are good and some not so good… and today is one of the [fill in your response here] days. But we do the best we can with what we have, right?” Or, “I was pretty good yesterday, and I believe I’ll be pretty good tomorrow. But today I’m just taking a break from too much of a good thing.” Or, “my energy requirements are high, and my batteries just can’t keep up.” Or, “I was contemplating the universe last night, and figured it out. But I’ve got such a hangover from all that thinking that I’m definitely feeling it, and I also forgot the answer.” A little levity goes a long way.

      • Peggy Min says:

        I like to respond, “I’m well, thank you.” I see wellness as a state of mind. As long as I am at peace knowing I’m doing as well as I can, I am “well.” If not, I might say “okay.” If they ask, “why just okay?” I feel free to tell them as much or as little as I care to.

      • Jeff says:

        Jessie, you hit a very sensitive nerve we all struggle with. When people ask me how I’m doing”, I just say: “The best I can” and leave it at that.

        Some times it gets to me; but then I remember a line from a Jackson Brown tune: “People ask you how you’re doing ’cause it’s easier that letting on how little they could care.”

        They’re not being insensitive, they just don’t want to complicate their lives with your problems. I sometimes forget that greetings are really just a social function that recognizes that a person simply exists; not a statement that you have significant value in their lives.

        Sigh… Life’s like that.

  2. Merlin Leine says:

    Thanks for shedding a light on some of the stuff us MS people deal with every day. I have dealt with MS since being diagnosed in 2oo1 and it isn’t getting any better can only hope for a cure.Merlin Leine

  3. Bill says:

    Around the holidays – sometimes a complete lack of empathy. If you need to stay home, it is as if you are inconveniencing people and ruining a family get together. But also, don’t stay home on our accord, because that makes us feel guilty. A little empathy goes a long way, or hey can we bring you back something.

    • Jessie Ace says:

      Exactly Bill! ‘But it’s Christmas, everyone will be sad if you don’t go!’ ‘But I’ll be sad if I do go because I feel so awful and you’ll all sit around telling me how awful I look and how I need to be in bed in any way. I can’t just switch the illness off and on!’ Ooh it gets my goat round this time of the year!

    • Jessie Ace says:

      You’re welcome Karen, I thought it needed saying. It is definitely something that unites us with invisible illnesses because nobody knows how to respond, but I guess why would they if they’ve never experienced it themselves? Tough one.

  4. Jeff says:

    Please, please, please add one more item to this list:

    Don’t say: “I know someone who has that and they’re doing just fine!”

    After forty ‘something’ years of this, it’s so much kinder to just say that you don’t want to get involved!

    • Jessie Ace says:

      Oh my gosh that is super annoying of someone to say too! Or when they say, ‘I know someone with that, well, they’re dead now’ – clearly that’s not helpful to us but people still do it.

      It was hard narrowing it down to 5 points to be honest! What else would you have put on the list Jeff?

  5. Panos Lambis says:

    There are numerous silly things people say and if it’s from a person I know cares, I put it down to being nervous and a little silly. I am sure those who care are often careful not to say something pathetic.
    Naive people seem to be great believers in snake or miracle cures, my wife, bless her soul is always trying to convince me about a cure she read or heard about on the internet.
    The nature of our ailment limits our energy so I suppose it’s natural for us to get fed-up and have to waste energy listening to what we consider to be dribble. I think we must try to understand others more.
    Understanding and not thinking of the malice, appears to be our greatest strength.

    • Jessie Ace says:

      Those that care for us want to fix things for us and I agree that is something we need to remember. It is very hard to prioritize our energy to listen sometimes though 🙂

  6. Pik says:

    Today,after walking long corridor from hair salon, pleasant woman held door&asked how i was doing,”I’m hurtin”.She said”aww,hava nice day. Hurtin& lot of pain are my normal answers. I need to check myself at times on my response,cuz my pain is a 6 to 7 when walking. At times i swear,any others don’t know what to make of it. Then I’ll say i have MS & it’s horrible. It doesn’t exonerate being miserable at times, but they are little more sympathetic.

    • I think we ALL need to remember that when someone who does not know us asks “how are you” they don’t really want to KNOW how we are. The apparent question can just be answered by “how are YOU” or I liked what Jeff said “the best I can”.

  7. S says:

    I got told the other day I was a hypochondriac! (by someone (a friend?) who’s a medical professional! ) 🙁 so gutted. From one health professional to another health professional (with MS)

  8. MollyC1i says:

    One I hated recently : middle of spastic swallowing problems, coughing and choking – “For goodness sake, drink some water”. Another, similar one. Coughing, choking and sneezing : “Must be dust !”
    Hells teeth ‘No’ to both.
    Going for an endoscopy on the 6 Jan…GP concerned as might have sprung a polyp or two ! Ho-Hum.

  9. Jason says:

    There is a cure for MS. I’m stunned. Ask your doctor where the US ranks in health care. Seriously. Go ahead and do it. If they don’t tell you, at best, they are 30th they’re lying. Look it up. Leave the country. Do it.

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