What Did You Say?

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Oh the advice I’ve been given over the last few years to “cure” or ease the symptoms of my autoimmune disease. Although well-intentioned, let’s be honest, after a while it is more than annoying.

First, for sufferers of rheumatoid arthritis, there’s the people who automatically think you have osteo-arthritis. “Oh yeah, I have that in my knee.” Um, no! No, you don’t. RA doesn’t affect just your knee, it’s your whole body.

Another favorite of mine is, “Have you tried glucosamine? That really helped my foot.” I’m not saying that glucosamine doesn’t help some people. I’m sure it does, but there is a basic misunderstanding of what RA is.

The other day someone told me that they just read an article online and I need to have more honey and cinnamon. I happen to love cinnamon, and eat it every day. Guess what? I’m still freakin exhausted all the time. I still wake up stiff and in pain, and cinnamon isn’t going to do anything to help my crankiness about it.

One of the latest comments I’ve heard a lot if the anti-inflammatory diet. I had read a lot about it, and I’m sure it can’t hurt. But it still annoys the hell out of me to hear people make their suggestions. Maybe I’m bitchy, or maybe I’ve just heard these suggestions too many times. It’s kind of like when I was pregnant and throwing up 20 times a day (no joke) and people asked me if I ever thought of trying saltines. Nope! After 25 weeks of puke, I assure you, I tried everything.

We all have heard silly comments and suggestions. Let’s here some of yours. Leave a comment today.

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8 Comments (+add yours?)

  1. twistedrandall
    Jan 15, 2014 @ 13:37:15

    I was told that my ra was caused by not eating the correct foods for my blood type. I argued with him for a bit and realized that we were too good of friends with him and his wife to argue so I changed the subject.

    Reply

  2. theblandau
    Jan 15, 2014 @ 15:25:09

    Wow, twistedrandall – that is so hard to do, but so wise. it’s easy to forget that the important things are relationships. But bravo, you.

    People do think it’s okay to recommend diet advice, especially. It’s kind of like: You’re doing it wrong. But when people mean well… it’s a tightrope act, I think.

    Reply

  3. Lupus Adventurer
    Jan 15, 2014 @ 17:26:02

    I just love the “go to this website” suggestion when people say there is some secret cure that the medical doctors don’t like or know about. If there really was a cure for RA or lupus, that would be world-wide headline news! It wouldn’t just be on somebody’s website, available only to read about for $29.99, and that pops up annoying “are you sure you want to leave this page” messages when you try to close the page. Equally frustrated here by well-meaning people who don’t understand auto-immune disease. LA

    Reply

    • autoimmunemamabear
      Jan 15, 2014 @ 17:27:42

      Yes, one of the cures mentioned to me was drinking dark cherry juice. It solves everything…I guess the medical community just hasn’t heard it yet.

      Reply

  4. posipesi
    Jan 16, 2014 @ 07:11:39

    “I have ____ for you to try!!”

    “You have to buy this ___! It worked miracles for my post workout pain!”

    “If you take a hot shower in the morning, you won’t be stiff all day.” (That one made me laugh out loud.. in their face)

    I had the honey and cinnamon one as well, and I just shook my head. I couldn’t help but think, “YES! My body is on strike and killing itself because I don’t feed it enough HONEY! BRAVO! Thank you DR! You’re a miracle worker!” – So I hear you on ALL of this. It’s just an annoyance that, unfortunately, those of us with chronic illnesses will always have to deal with. Just another pile on top of what we already deal with.

    Reply

  5. Trisha
    Jan 17, 2014 @ 01:21:16

    I know people are trying to be helpful but it really comes across as insulting. I was told that I should try a burst of exercise, just like a quick burst. Apparently, it’s the cure that we’re all just too lazy to find.

    Reply

  6. Dead Men Don't Snore
    Jan 18, 2014 @ 10:44:01

    Last week four people sent me a link to a blog that claims chronic illnesses are caused by drinking too much diet cola. The fact I have have food intolerances and haven’t eaten/drunk highly processed foods for almost a decade doesn’t seem to have dented anyone’s confidence that they’ve found the cure for all my ills.

    Reply

  7. Jenny
    Jan 22, 2014 @ 04:04:47

    I’ve been told I need to go vegan, or I need to try different spices, and pineapple. Or pray. Praying seems to be the answer to all my problems. If I do that, I will wake up pain free tomorrow!

    Reply

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