What NOT to Say to Someone with Chronic Illness

What NOT to Say to Someone with Chronic Illness

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We all know that being sick is hard. Whether you get the occasional cold or flu, or you live with a chronic illness, being sick sucks. It’s just that simple. So why are those with chronic illness treated so much differently that those with the occasional ailment? Well, there are a few theories on the matter.

One is, people living with chronic illness often don’t look sick. Unless you know us and see us on our worst days, you wouldn’t have any idea that we were dealing with disease. This leads people to believe that it can’t be that bad. After all, when people get the flu, they often look as bad as they feel. Those of us with invisible illnesses are always honing our skills to look normal. We don’t want to stand out or be pitied. We WANT to be normal. So dang it, we’re going to at least try to look the part. But this can lead to a bit of confusion, unfortunately. People forget we’re sick or just honestly don’t know. And that means we’re doubted when we are having bad days. What NOT to Say to Someone with Chronic Illness

Another potential reason people with chronic illness are often doubted is because of the fluctuating nature of their ailment. Just like everyone else, those with chronic illnesses have good and bad days. But sometimes, our bad days leave us bed-ridden. Sometimes, so do our good days. We try to take full advantage of our good days. We do what we can to, well, do what we can while we feel human. Sometimes we overdo it and end up in bed for while afterwards, but those good days are the best. I mean, who doesn’t like to feel decent, right? But with these good days come doubt and suspicion. Many people don’t understand how someone can go from feeling horrible to great, and vice versa, so quickly. And with that misunderstanding comes doubt that you’re even sick at all. What NOT to Say to Someone with Chronic Illness

Really, I think the main reason people with chronic illnesses and invisible disabilities are often treated so differently is just misunderstanding and lack of knowledge. Because people don’t see these ailments, they don’t believe in them. Or they don’t know about them. Or, maybe they do, but they just don’t understand. How could anyone understand unless they’ve experienced it, right?

That’s part of the reason I started this blog. I want to help. I want to make sure those with chronic illnesses or invisible disabilities know they are not alone. Others are dealing with similar things as they are. But I also want to help those who don’t have that burden understand those who do. I want to help them know what not to say to someone with chronic illness. I know there is no way they can fully understand unless they deal with it themselves, and I definitely wouldn’t wish that on them. But I want to help them have an idea that we are people, too. We have hopes, dreams, goals, careers. We have lives. And we’re trying our dang best to feel our best given our circumstances. What NOT to Say to Someone with Chronic Illness

So with all that said, I give you a list of things NOT to say to someone with chronic illness.

What NOT to say to Someone with Chronic Illness

  1. “But you don’t look sick.” That’s by design.
  2. “You just need to lose weight.” It’s more than that. See this blog post.
  3. “Have you tried yoga?” Yep.
  4. “Have you tried going vegan?” I already have so many dietary restrictions…
  5. “Have you tried (enter any health fad or treatment here).” I promise, we’re trying everything.
  6. “But you were able to do that yesterday.” I know. And I’m grateful for that. But today, I can’t.
  7.  “You just need more sleep.” I do my best.
  8. “You sleep too much.” My body and your body need different amounts of sleep.
  9. “Suck it up.” If I suck it up anymore, there will be nothing left.
  10. “We’re all tired.” Please understand the difference between “tired” and “fatigued”.
  11. “Stay positive!” Accepting my illness and my reality isn’t negativity.
  12. “You’re taking meds? Those aren’t good for you!” I’m just trying to feel human. See this blog post.
  13. “You’re trying to do it holistically? That stuff doesn’t work.” I’m just doing what’s best for me.
  14. “You’re just bailing because you don’t want to hang out.” No, I REALLY do want to hang out. But my body just can’t take it today.
  15. “So, when are you going to get better?” Well, it’s a chronic illness. So unless there are some pretty great medical innovations in the future (and let’s hope there are!), I will have to deal with this illness for the rest of my life. I will have periods of minimal symptoms and periods that aren’t so great. Maybe (hopefully) I’ll even go into remission. But this illness is a part of my body, and I will always do what I can to make sure I’m able to live my best life regardless. What NOT to Say to Someone with Chronic Illness

So please understand that you don’t always know and can’t always see the struggles of others. Before you say something to your friends dealing with an invisible illness or disability, please remember this list of what not to say to someone with chronic illness.

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34 comments / Add your comment below

    1. Thank you for giving it a read! I hope everyone can remember that we don’t always know what others are dealing with, so it’s best to be kind!

  1. Beautiful and sincere post. As someone who works in mental health department I can say that all of this can also reffer to people who suffer from mental health problems. Thank you for this!

    1. Thank you so much for your kind words! I agree this can definitely fit for people with mental health problems. Anything that others can’t see or understand. Which just breaks my heart! Thank you for your work in the mental health department! Your work is so important!

  2. Oh my, I can totally relate to this post. I feel some people just do not understand a chronic illness or chronic pain that is every day of your life. Thank you.

    1. It really can be challenging because others have such a hard time understanding what they can’t see or have never experienced. But we have the opportunity to help educate them! I’m glad you found value in this post as well! I’m sorry you’re dealing with a chronic illness and/or chronic pain, but you’re definitely not alone!

  3. “But you don’t look sick.” This question is really illogical. Even sometime people think that you should look like a mad person if you have any mental illness. Strange and equally dumb reaction. This is wonderful list. I hope more will read, support and spread awareness as like we like to do on our blog. Best of Luck. Keep writing like this.

  4. It is something if you don’t actually look sick because say, you’re not sick. If you tell people that I can’t eat a certain thing, like a lot of fried foods, they look at my like I have two heads.

    1. It’s just astounding to me how much people worry about what others eat or how others live their lives! Just keep doing what’s best for you girl!

  5. This is a great share, it reminds me of the old saying of until your have walked a mile in someone else shoes….. your #14 really resonates with me. I suffered horrible debilitating margarin’s last year, which we are starting to getting under control this year, but the labels of being “anti social”, “snobby” or not wanting to “hangout” haunt me. You really do have to preserve yourself to keep moving forward some days and people just think you are blowing them off, which is painful. What I have learned is who your true friends are, that really care, and who are just acquaintances that just want to be seen with you.

    1. I’m so sorry you had to deal with that! Migraines are so incredibly debilitating and people unfortunately don’t quite realize that. And how different bodies function differently. I similarly have had that experience of discovering who my true friends are. And I’m incredibly grateful for that, as hurtful as the process initially was. But thank goodness for the good ones, am I right?

    1. Thank you so much! I’m sorry you deal with this as well! And I hope you loved CSU as much as I did! It’s a beautiful campus!

  6. This article really opened my eyes. Although I have never said these things to anyone…I have often wondered what I SHOULD say to them…to you. I keep my mouth shut often because I certainly don’t want to offend anyone or hurt them, but I do want to know how I can help them. What should I say to them? What do you want to hear? How can I help someone with a chronic illness? My husband is currently suffering from something. We don’t know what it is yet, we’re on year 4 of trying to figure it out. I want to help him, but what do I do or say?

    1. Thank you SO MUCh for your honesty and openness. Honestly, we want to know that we have your support. We want to know that you believe us, that you know we’re trying to do our best. Love and support is all we ask for. Maybe have a conversation with him specifically and ask what he needs or wants from you with regards to his condition. I know exactly how frustrating it can be to not know what’s wrong, so knowing you’re by his side rooting for him and being his advocate I’m sure is incredible for him. Every person is so different, so it would definitely be worth the conversation with him. But I have no doubt that your love and support is huge for him.

    1. I’m so glad to hear that! Unfortunately, it seems you’re the anomaly. But I hope you don’t have to deal with any of this ever!

    1. I couldn’t agree more! There’s a major lack of understanding and a lot of miscommunication, and I hope to help alleviate that a bit! Thank you!

  7. These are great tips on what not to say to someone. I dont know what theyre going through so I tend to just listen.

    1. Listening is literally the best thing you can do! Most of the time, we just want to be heard and supported. So that’s wonderful! Thank you!

  8. Thank you so much for sharing this. As someone with an autoimmune thyroid disease, I have days where I can barely get out of bed and days where I’m thriving. People often “forget” because it’s not visible unless I’m having an especially intense flair. Happy to know there are others out there who understand!

  9. Yes, yes and yes! My son is on the spectrum and living in this world with an invisible disability or chronic illness is tough. Suck it up or pull yourself up by your bootstraps is my pet peeve. Good for you for putting this out there.

    1. It’s one of my pet peeves too! That and “it could be worse”. It can literally ALWAYS be worse, but that doesn’t make your struggles any less valid. Thank you so much for taking a read! Keep being an awesome mom to your sweet boy!

  10. I can’t believe that people would actually tell you not to take your medicine! Everyone should strive to be just a little more understanding of others’ health and not try to dictate how others care for themselves.

    1. Isn’t that crazy? I’ve had quite a few people judge me for taking western medications because they aren’t natural or are made from chemicals. But it’s my business haha not theirs. And if it makes me feel better and allow me to function on a normal level, I’m very happy with that!

  11. You’re so right. I have Young Onset Dementia. I even have doctors and nurses saying to me, “but you don’t look like you’ve got dementia. You can still communicate.” When I have the energy I communicate the hell out of them with what dementia is and is not.

    1. I’m glad you’re sticking up for yourself! I can only imagine how difficult Young Onset Dementia is, and it’s even more frustrating when medical professionals don’t understand. Stay strong girl!

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