10 of The Worst Comments I’ve Received Since Becoming Chronically Ill and How I Handle Them

We visited with my 93 year old Aunt and my Parents, the other day. As we were getting ready to leave, she said: “Stace, mark my words, this wedding is just what you need to get better”, right before saying “you look great, Stace!!” What I know she meant as a compliment and as a beacon of hope, instead, cut me like a knife. So before I go on to explain why seemingly innocuous comments (or not) can hurt so deeply, here’s 10 of the rudest/dumbest/most insensitive comments I’ve received since becoming chronically ill:

  1. How sick can she really be?
  2. You already knew you had Lupus-why would you be upset to see the same diagnosis in writing?
  3. Fibro is that disease that people get when they don’t want to work
  4. My friend had Fibro and cured it by eating celery
  5. Everything is normal, have you thought about seeing a Psychiatrist?
  6. So why did you feel you needed to go to the Emergency Room?
  7. If you want to get out of doing it, just say so
  8. So, what do you do all day?
  9. (my sibling to my Daughter) Yeah, I know your Mom is “sick
  10. (when reviewing a note from my Doctor) Patient claims her whole life has been affected since getting sick

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So, back to my Aunt for one second…….am I really that sensitive and unable to take a compliment or that something this innocuous offends me? No. I’m not. And neither are you.

I am super, super close with my Aunt; in fact she’s probably the person I am closest to in my whole family and she is one of the very few people who “get it”. She struggles tremendously with chronic pain and it has caused some pretty dramatic mental health issues. This commonality further forged what has always been a really tightly knit bond.

So when she says something like “you look great” or that my Daughter’s wedding will cure me, it doesn’t mean just that; not to me. Instead, it’s this super complex emotion of living with an invisible illness: I may look “great” with a little makeup on, but I just spent three days on the couch. Or by saying that a “wedding is just what I need to get better” somehow implies that I have any control over my illness or that there’s hope I will get better. Both of those are things I long ago gave up on-so it makes me sad she still holds on to them. But that’s my interpretation-not her meaning.

So now how do we handle comments like this or any of the ten I listed above?

  1. Recognize the source. I absolutely know my Aunt would never say anything to hurt me. Instead, she constantly praises me and prays that I’ll get better. Understanding the reason behind the comments often can eliminate any negativity you interpret from them. This also applies to toxic people you have in your life; like siblings who tell your child you’re faking. You cannot expect an ignorant person to make thoughtful comments or have meaningful questions. They’re ignorant.
  2. Remember that the term “invisible illness” was coined for exactly that reason; it’s invisible. And anything that can’t be seen is difficult for people to believe or understand, like Santa Claus. When someone says they’re sick, people expect to see someone ravaged by disease. To instead see someone who looks fine or normal is difficult to understand for many.
  3. Why is the comment being said? Look at the context. Is it to get back at you or insult you? Or is it truly just a case of disbelief, not knowing what to say or awkwardly trying to offer help??
  4. Remember that illness can be frustrating. Not just for us, but for those who care about us. When I married Bri, I was nothing like this. Neither was our life or the expectations we had for life. As challenging as it is for us to adjust to the new norm, it’s just as difficult for the loved ones in your life. Limitation is frustrating.
  5. Sometimes, a question is just a question. A statement just a statement. No more, no less. It was actually my Mom who said “so what do you do all day?” It hurt, I won’t lie, but I had to step back and remind myself that she was just genuinely curious. She could never be expected to understand all the complicated context that I surround such questions with.
  6. Remember, sometimes we just want to be treated the way we used to be treated. If you wish for that, then having people be authentic and real and talk to you without thinking means that they will absolutely put their foots in their mouths. Do we really want everything said to us analyzed before it’s said? I know I don’t.
  7. People who have never dealt with illness or health challenges have no point of reference. It’s super hard to relate to something you’ve never encountered yourself. It would be like telling the Queen of England that you got a great deal on toilet paper at Target.
  8. As for Doctors. I have no patience here. They get no outs from me. So when it comes to them, if you have one who is belligerent, unsympathetic or dismissive, find someone else. Our whole lives DO change when we get a disease that cannot be cured. That’s a fact.
  9. And last, but certainly the most important, trust yourself. Trust you are the same lovable, intelligent person you were before you got sick. Trust that you did feel you needed to go to the ER. Trust that you know you are that sick. Trust that you do need extra time to do things. Trust that you are not a faker. It’s one of the hardest lessons I’ve had to fight with; trusting myself enough to know what I know.

Being sick comes with all sorts of challenges. Certainly people’s responses are included in that. So next time a comment cuts you to the core, before reacting, consider the source.

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

14 thoughts on “10 of The Worst Comments I’ve Received Since Becoming Chronically Ill and How I Handle Them

  1. If it were called cancer people would have a framework to categorize it. Since most of the condition is unknown to the medical world, it stays out of cultural framing.
    Stay as strong as you can, and don’t allow the wedding to overwhelm you.
    Delegate. (but you know this I’m sure)

    I’ve watched the same thing happen to Robin from relatives and doctors. It’s a thing….on top of everything else.

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    1. Yup, you’re right. It’s a thing. Not sure why that thing is put on us-but it is a thing. I have been much luckier than some people I’ve heard of. So I just try to take it in stride. And you’re so right. I don’t think it’s done to Diabetics-so why is it different.
      As for the wedding, I’m fortunate enough to have a lot of help and it’s super exciting. But it’s certainly proving the need to pace myself. It’s a sad thing to have to have disease interfere with a wedding. How dumb to have to have it be like another person involved. But that’s what we got, so we’re taking it in stride. Contracting out everything, down to the shower!!
      Thanks Mark-wish Robin well for me ❤️ and take care of yourself, to!!

      Liked by 1 person

    2. Trust me, people say equally crass and insensitive things when you have cancer too.
      “But you look so well!” Should I be emaciated and bald as I’m pushed around in a wheelchair?And no, I don’t want a kale bloody smoothie even if your next door neighbour’s Auntie’s dog was cured.

      Liked by 1 person

      1. LOL. Oh gawd with the smoothies. I truly am all for a healthy diet, but it drives me crazy. If celery juice cured your Mother’s Cousin’s Sister’s Aunt’s friend, then it wasn’t actually a disease that she had. Argh.
        And the “you don’t look sick” or “you look great” comments kill me. I know they shouldn’t, but I hate them. I’m glad I look so good-I just spent three days screaming in pain…..
        It’s almost easier when I do look dreadful.
        Anyhow, I feel your pain. Thanks so much for commenting and giving me a laugh!! ❤️

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  2. I understand where you are coming from. I have had many make statements that seem innocuous but they hurt. I have fibromyalgia, chronic fatigue and had a DVT which led to chronic vein insufficiency. I do wear a compression garment on the one leg that had the DVT (it helps me walk). But I will say it is flesh toned and not really noticeable.
    I have had members of my immediate family make what they thought were helpful comments but were not. One stated that she felt that I just wanted attention and another stated that she read about a diet and that I should follow that.
    I will say until I was diagnosed (at the time by three different doctors) I had not heard of this health issue–fibromyalgia. It was in 1992. I have since had 3-4 other doctors make the same diagnosis.

    I one time had someone yell at me for parking in a handicap parking space. I did have the parking placard. I had looked all over for a parking space and it was the only one available. What the person did not know is that I had just dropped off my father who was in his 80’s and used a walker to get around and I did not mind parking out and then walking to the store. I only used the placard when I had him or have my mother in the car. I was not going to take this person yelling at me so I just quietly lifted my pant leg –so she saw that there was a compression stocking on my leg– and I continued on into the store. Somehow she found me in the store walking along side my father. I told her at that time that you never know what someone else has to encounter in their life. I give others the benefit of the doubt.

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    1. You know, it’s funny, I won’t use my placard-no matter how badly I’m feeling-unless my Husband is with me. He tells me I shouldn’t worry about other people but I do. Not that I drive alone very often, at all. And like you, I try not to use it, unless I’m in a really bad way. All of which is crazy, because my Doctor filled out the medical slip in order for me to get it!!!!
      Anyhow…..I’m sorry. Some of the worst comments have actually been made by family and what we thought were close friends. Somehow, it’s as if those people think they’re entitled to speak their opinions regardless of how it makes you feel. But, a lot of it is the context. I think when you’ve gotten dumb or hurtful responses, you tend to start becoming more sensitive to any comments at all. And while people can certainly be rude, not everyone means to be.
      Tough to have one more thing to deal with on top of everything else!!
      Thanks so much for commenting!! ❤️

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    1. Absolutely! Thanks for asking!!
      It’s sad to hear from so many people that they can relate-but that’s exactly why I wrote it, too. It’s enough to be sick without having such negativity thrown at us. And while some people are just plain ignorant, a lot of people also just don’t understand. So it’s tough….it’s tough not to get offended by people who don’t mean to offend and the ones who do, just cut to the bone. Thanks so much, Kim!! Keep rolling, girl 😉

      Liked by 1 person

  3. I’ve found the comments about how I look ‘great’ or like I’m ‘doing well’ pretty difficult to deal with, too.
    Some of those comments you’ve had though, directly and indirectly… jeeees. I’m so sorry. Sometimes ignorance is just that, ignorance without malice. Sometimes people don’t know what to say and they worry about not having the ‘right’ thing to say, so they come out with something they think is neutral but we interpret it rather differently. Other times I think people either set out to hurt (which some do to make themselves feel better) or simply don’t care the effect their words have. And these words can cut deep.

    It does help, even a little, to consider the other side to these sorts of comments, to get a new perspective on them or to consider where the person who’s saying them is coming from. As you say, question why it’s being said. It’s not easy to not be upset or offended by comments of ignorance but there’s often, I think, an aspect of ourselves that acts as our own worst enemy; we see the negatives, we hone in on them, we add our own feelings to it, we create a story from it with the negative feelings we have about ourselves/our situation/our illnesses. You’ve made some really excellent points, Stace.

    Caz xx

    Liked by 1 person

    1. Funny how insulting “you look great” and “you don’t look sick” can be-isn’t it?? That goes right through me. Not that I want to look awful, but it’s tough to not have your outward appearance match what you feel on the inside. “Gosh you look great, Stace”…hey thanks! I feel like I’m gonna die, but thanks. 🙄 Except somewhere in my heart I know people are just trying to be nice.
      As you just said, that’s just it. Even nice comments can be interpreted differently in our heads, as a result of previous comments or situations that are totally unrelated.
      So it’s tough to find that balance. Important, but tough.
      Thanks Caz!!

      Liked by 1 person

  4. I’ve been told that it’s all in my head by several different doctors. I finally found one who actually took the time to listen to me and officially diagnosed me with fibromyalgia in 2016.
    I was told once that my bipolar disorder/depression/anxiety was a result of not having enough faith. That if I just prayed and had enough faith, I would be healed. Now I’m not saying that God can’t heal me from my mental and physical ailments because he absolutely CAN but will He? I don’t know! But I do know that my faith has nothing to do with my illnesses.

    Liked by 1 person

    1. Finding the right Doc, while sometimes seemingly impossible, is crucial. I’ve had both and I tell my PCP every time I see her how grateful I am to have her. Her help, support and treatment greatly impacts my quality of life. So, I’m glad you found the right one!!! It’s terrible to live with disease, but it’s so much worse to have it suggested that it’s all in your mind. How dismissive. I used to torture myself thinking if I had done something wrong that caused it. So I’m glad you’re resigned that it’s just something that happens. It’s not your fault. And I think using faith to get you through is beautiful, it’s just one more tool in our arsenal to fight back. I wish you well. ❤️ Stace

      Liked by 1 person

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