Worst Things to Say to a Person Living with a Chronic Illness

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Living with an Illness ME Videos

One of the most difficult aspects of living with an invisible chronic illness like ME is the fact that people don’t understand exactly how ill you really are or they do and give the most unhelpful advice. This is something I have experienced myself and I’ve heard other sufferers say so many times.

But most of us don’t complain about it or even pull up those people even when they’re saying the most outrageous things. This is for a number of reasons from being too ill to muster the energy to do so, or just not feeling brave enough to say anything.

So I was thinking about Christmas and the holidays and how many of us must have had to interact with friends and family who just don’t understand. How many of us must have heard judgemental comments or advice all well-meaning and given in a helpful spirit, but which have left us feeling even worse?

Yes, we sound whiney and ungrateful when we complain about these comments, but that’s only because healthy people don’t understand how devastating their words can be. So to try and explain this I made this the subject of my latest video titled ‘Worst Things to Say to a Person Living with a Chronic Illness’. Please be sure to like the video and subscribe to my YouTube channel. I will be uploading every week now and I am taking requests, so if there is an aspect of living with a chronic illness that you want me to cover or even rant about, let me know and I will be happy to oblige.

Let me know in the comments below or even better on the comments section of the video, what are the worst things people have said to you. How did it make you feel to hear such things? As always thanks for all the support and encouragement – it’s what keeps me going and making these videos.

  • Robert Christ

    Great video thanks for producing it!

    • Jay

      Thank you so much for watching it and for leaving a comment!

  • Robert Christ

    By the way I missed subscribing to your channel cause I couldn’t find the link

    • Jay

      Oh I’m sorry! If you go to my channel on YouTube, or press the YouTube button in the above video (bottom right) you’ll be able to subscribe. Thank you so much for wanting to subscribe. Here’s the link to the channel: https://www.youtube.com/channel/UC_ddezGM5cIkkMZ3Hpe4zzw and you can also watch my latest videos there. :)

  • Nice – unfortunate that you have to do this kind of explanation. I’m sure it took a lot of your energy. I don’t leave the house much – so I don’t have a lot of people who need this kind of bashing on the head. I’ve have CFS for 27 years now, lucky me.

    I guess you could add things like, “How nice for you to retire early.” or “You must not have been very good at your job if you aren’t trying to go back.” and the like – most people don’t understand the finances of disability any better than they understand chronic illness. We must be laying about letting society support us – how nice for us. /sarcasm (some people don’t get it otherwise).

    I had a good career as a physicist at Princeton, and two toddlers, when I got sick, ironically at a Physics meeting where I was presenting a paper. We have another child since, and it has been very tough.

    And with all my ‘free time and energy’ I have written a novel with a CFS main character (Pride’s Children: PURGATORY) that is NOT about CFS. It only took me fifteen years.

    Keep doing what you do. Eventually the water will wear through the rock-hard hearts of the able. Or it will get to the sea.

    • Jay

      Thank you so much for watching the video and for leaving such a wonderful comment. Yes, it’s horrible that I have to discuss these kinds of topics in videos. It takes so much, not just physically but also mentally and emotionally. This is why comments like yours really remind me why I do it and help to keep me going.

      Well done for writing a novel, no matter how long it took you. It is an amazing achievement for a healthy person, let alone for someone with CFS. One day we won’t need to explain the lives we lead either because the illness will be recognised or because there will be a cure.

      • Thanks – and I’m well into Book 2. I have review copies – absolutely no obligation to actually review if you’re one of us – and you can read a little or a lot. I have tried to adhere to the highest standards (which is why it took so long – I’m rather slow, since I only get a couple of hours of usable time daily, if I play my cards right and do nothing else).

        Or check me out by name on Amazon.

        Alicia

        • Jay

          I’d love to review your book – I try to showcase the work of other sufferers as I know how much harder it is to get the work done and am truly in awe of it. Maybe we can even have an interview with you, if that is OK, like the one I have published with Maria Mann. I will definitely look you up on Amazon. :)

          • Why thanks, that would be lovely. Do you have KU (or Prime + a Kindle or Fire device) or may I send you an electronic Review Copy in epub, mobi, or pdf format? I need an email address (mine is abehrhardt [at] gmail if you’d like to send your email address to me there).

            I especially like readers who understand chronic illness; it is a factor in the story – but not the main one at all.

          • Jay

            Sure! That would be great – I’m sending you an e-mail right now. :)