Video: What NOT to say to an ill person


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If you have an invisible illness you have likely heard people say, “well, you look fine” or “you just have too much stress.” I have put together a video featuring a sampling of some of these things we hear. I couldn’t believe how easy it was to write the script, because I just started scribbling down all of the things I have heard over the past twenty years of living with degenerative rheumatoid arthritis.

I didn’t make this video to make people who are trying to be helpful feel badly and I didn’t do it to make those of us who are ill to feel angry with them.

Rather, let’s use this as a learning opportunity. Those of us who are ill can watch this and know that when people say these kinds of things to us it is so common that there is a video with those comments! It’s not personal–it’s just typical.

And for our friends or loved ones we may share it with, it’s a chance for them to possibly hear their own voice and be aware that words really can hurt.

If you like it, please share it! And we also have 20 tweets on this very topic you can share as well. Thanks, friends.

-ljc

Comments

  1. Jane says

    I think I’ve heard just about every one of those comments! Maybe not the “man up” one but very similar. Sad really. Underneath allof it is the doubt that you’re really unwell, the implication that you’re lazy/faking/just stressed. That’s what I hate.

    • Ben says

      Thanks for the video. It does help knowing this is so common. I have also heard most of these “helpful” comments. I want to believe people are just trying to help but it is difficult when so many of the comments have undertones of disbelief regarding the seriousness of your health problems.

      • Beth Wheeling says

        I think that most people do not want to want to contemplate the kind of emotional and physical pain that most of us are feeling. I hear things like that all the time. Take more fiber. Take more vitamin C. Exercise.
        As if all this is possible? They cannot imagine not being able to get out of bed from fatigue is like. They want a simple solution like adjusting your attitude. Believe me, if it worked, I would have done it. I am seriously considering animal sacrifice…just kidding…but shows you the level of desperation that I feel sometimes. People are so simple. Their lives are simple…until they are not.

  2. Carrie says

    I think people say these things because they don’t know what to say. People, especially in America, fear illness and death. If they can come up with the ‘easy cure’, then they don’t have to watch someone they care about suffer. Good friends eventually understand that if there was an easy cure, doctors and patients would be the first to celebrate the end of the disease!

  3. Thomas says

    I have question who are the people in those video? Are they actor? They have invisible illness too? Just curious. My next door friend she say to me. I need to get out the house and quit bitching and say this you are to young have back plm. I tried to explain to her abt my AS illness and all she do blow me off

  4. Debbie says

    How do I get my husband to understand that I just cannot function well normally with all of my illnesses. I have a high pain tolerance and do not take pain medications. My doctor’s are telling me that I need to start and not put up with the pain the way I do. I feel that it might just cause more health problems with the side effects of them. I have so many drug allergies, that I take the least amount of medications as I possibly can. My list of health problems is a mile long and NO, I am not a hypochondriac. I would be a whimper asking for all kinds of meds, and I am the opposite!!! I have spells where for the past year, I have been trying so hard to stay out of bed, but after a couple of days of running errands, it wears me out for 2-3 days.
    So, how do I get my husband to understand that I am not happy with the way he tries to play doctor with me and truly has no idea what I am truly feeling? I am having more than just pain, I have several symptoms torching my body including, epilepsy, asthma, psoriasis, celulitis, psoriatic arthritis, fibromyalgia, osteoporosis, tenitis, bursitis, Alpha-1-Antitrypsin Genotype, Primary Bilary Cirrhosis (not from alcohol, never have been a drinker) and many more! What do I do???

  5. Beth Wheeling says

    I am sorry that you are dealing with this on top of being sick. I think that your husband is having problems letting himself understand the way that chronic illness can ruin your life. I would get another doctor first. Telling you not to let things bother you is ridiculous and totally disrespectful and poor practice. Your symptoms are real. Your doctor has no right to tell you that they are not. There is help and you may need a pain specialist.
    You will not be able to prove anything to your husband. He is not able to conceptualize the kind of life that people in chronic pain lead. There is a great quote on this list by Toni Berhnard that speaks to how unable others are to understand how pain changes our lives. They get very lonely. If I had kids I do not know what I would do. You are a trooper.
    You are entitled to your pain. I would try to find a rheumatologist who is caring. They have a lot of patience and hopefully would support you in making it clear to your husband that you are suffering. Tell your husband that when he gets a medical degree, then he can treat you.
    This site is an amazing resource for those of us who deal with chronic pain. The fatigue keeps me from getting out of bed as well. It is major depression, which often comes along with any kind of chronic illness. It could be the fibro or chronic fatigue as well. It could be the meds that you do take. I was a psychologist until pain meds made me so confused I was a HIPPA nightmare.
    Depression comes from feeling helpless.
    Hypochondriacs are very focused on non existent illness. Yours are not non existent!
    They are real. I would get a list of all of the symptoms of all of the illnesses you have. I would not cook for him until he read it all, then every time he approached me playing doctor I would make him read it again. You are doing really well. He needs psychotherapy to get real. Unfortunately most people cannot even imagine how our days go. They have no idea nor do they want to contemplate how exhausting this is. You are in the right place and you deserve to get some support for yourself, either a group or a therapist if you cannot find a caring doctor.

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