Don’t Say….

Allison at Taking Life For a Spin posted a wonderful list of things you shouldn’t say to someone with chronic health issues.

I liked it so much I asked her if I could post it on my blog, luckily she said yes.

Don’t say…

Please think twice before you say these things to me

(or to anyone with a chronic health problem):

 First, before you read this list, know that if we talk regularly, you have probably said at least one of these things to me before…and that you’ll probably say them to me even after reading this list. It is ok. I love you anyway…and I know that you say these things out of love. I just want you to know why you get those awkward responses from me when you do say them…  ;-)

  1.  But you look good. I know you mean this in a good way, but just because you can’t see my illness doesn’t make it is any less real. Complement my hair or outfit or something, I’d like that. I guess it is the “but” in front of “you look good” that makes that feels like you are being dismissive of my experience somehow.
  2. You sound (or act) like you feel better today. Yes, even when I feel awful, there are times that I laugh and smile and enjoy myself. When you tell me this though, I never know how to react. I often am not feeling any better, so then I have to explain that. Maybe just tell me that it is nice to hear me laugh. Or maybe just let me enjoy the moment.
  3.  You should be glad you don’t have to (work, be out in this heat, listen to that lecture, etc). No, I’m not glad. Trust me, I’d rather be healthy and having to put up with the everyday annoyances of life than going through this.
  4. I wish I could have a few days to stay at home. Sure you do. When I’m healthy and running myself into the ground, I do too. I often wish for a few days off. However, I’d never wish for this! What I’m going through is not a vacation. Don’t wish for it.
  5. You must be so bored.  Nope. Boredom is when you have energy to spend and can’t find anything interesting to spend it on. I can’t remember the last time I was bored. I’m too busy trying to figure out how to get to the bathroom and back to be bored. Every bit of energy that I have is going into surviving my day. I’m not sitting here wishing for ways to entertain myself.
  6. This is ridiculous. You should (get a different doctor, try a different medication, etc). There must be (someone/something) that would help. Careful here. I share your frustration, and we all want answers. Casually telling me that I should get a different doctor or try a new medication sometimes feels to me that you don’t think I’m doing enough to get better. Do you know how many doctors, medications, supplements, and alternative treatments I have tried? If you don’t, then maybe don’t say this to me. I’m certainly open to new ideas – just talk with me long enough to get an understanding of what I have tried before you tell me what I should do.
  7. You should see House. I’ve heard this 300 times. He isn’t real. Trust me; I’m seeing every doctor that I think can help me.
  8. You’re at (work, school, etc) or having friends over, you must feel better! Not necessarily. On good days, I can medicate and push myself through some things. You aren’t with me an hour later when the medication runs out or when I crash. I know you are looking for any sign that I am feeling better. Trust me, when I feel better, you will know. I won’t keep it a secret.
  9. Just think positively and it will go away. First of all, you saying this to me suggests that I’m not thinking positively. I actually think that, emotionally, I’ve been handling this pretty well. I’m also very aware of the “mind-behavior-body” connection. Sure, stress makes everything worse and positive thinking can help. However, don’t over-simplify here. I can think about rainbows and butterflies all day, but the room is still spinning.
  10.  I know just what you are going through. I have a few friends who suffer with chronic health issues. Ironically, they have never said this to me. They know enough not to. I do appreciate empathy, and anyone who has had vertigo (even for 10 minutes) does feel like a kindred soul at some level. Still, be careful with your words. Just because you drank too much and the room spun one night doesn’t mean that you know what I am going through.
  11. Any variation of “All things happen for a reason.” or “God gave you this to teach you a lesson.” I agree that the adversities that we overcome in life are part of what makes us who we are, and I’m all for learning from my experiences. However, when you say things like this to me, it almost comes across as “You deserved this.” Don’t go there.
  12. What are you doing this weekend? This falls under the category of just not thinking before you speak. I know this is just a typical conversation starter for most people. For me, it just reminds me of all of the things that I cannot do because of my illness. Also, answering, “Trying to get to the bathroom and back just like I do every day” is awkward.

So what should you say? I really have no idea. I know how hard your job (as my friend) is, and I often wonder whether it is harder to be the person who is sick or the person who loves the sick person. I know you’d “fix” me if you could. Humor is good. Laughing always makes me feel better. Tell me what is going on in your life. You aren’t rubbing it in because I can’t do whatever it was you did today – I still want to know about your life. Be understanding when I just don’t have the energy to talk to you on that particular day. Even listening can be too much some days. Just be there. Even if you are saying all of the wrong things…you’re still letting me know that you care. ❤

Anyone with chronic health issues have something to add to this list? Leave a comment below…

Everything above, except for my introduction, is quoted from Allison.  If you’d like to share this list, please get her permission, and give her credit. (but you all knew that didn’t you?  Visit her at Taking Life for a Spin)

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo

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7 thoughts on “Don’t Say….

  1. This is great Wendy, thanks for posting!!

    I actually hate it when people ask me how I’m feeling. Am I standing up and out of the house? if so, I must be feeling at least reasonably okay. Please don’t ask. I’m trying not to think about it and just pretend I’m normal.

    I have a well intentioned friend who lives on the other side of the country, and every time I sign on to Skype, she asks how I am feeling. Please… ask me about other things. I don’t always want to talk about my illness, or how I am feeling that particular day. Just let me pretend to be a normal healthy person!

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    • Katie, Yes!! I have a number of friends and my sister and father, who only ask how I’m feeling…they will email me just that sentence…Is that all I am? Do you think that’s all I can be? w

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  2. All excellent points! I can completely relate to just about every one of them. It can get so frustrating to be asked/told the same annoying things over and over. And I hate saying that I still feel bad many days even though I’m running around, trying my best to carry on. I love the insights, they’re so true. But when this happens to me, I try to pause and remind myself that this is the best way the person in question knows how to show their love and/or concern for me at the moment. And, lately, for any attempt to reach out and let me know they haven’t forgotten completely that I’m suffering, I feel grateful. Not very many people ask me anymore how I’m doing because I appear to be functioning most days. But I still have MM and all the residual *&*^ that goes with it.

    Before I had MM, I had twins (plus another son who is only 18-months older than them) and the same kind of seemingly ignorant questions and comments popped up all the time when they were babies. Do twins run in your family? No. Are they identical? Really?! One is a boy, the other a girl. Did you do IVF? No. And what if I did? Or I often still get, “You’re brave!” What choice do I have? Send someone back? Well, you get my point.

    One night, when they were babies, I was at a twins’ group meeting and a bunch of moms were sitting around complaining about how these same incessant questions could practically ruin their whole day. Some were literally angry. While listening to them, it dawned on me that, before I’d had twins, I probably asked people the same stupid questions. I did it because I was simply interested in knowing about them or wanted to reach out and show my excitement and happiness for the parents. From that night on, I just smiled and answered people’s questions politely and calmly. If I was in a hurry, I was brief, but if I was in the mood, I’d work on turning the conversation back on the other person.

    I find I now use these same tactics with my Meniere’s. I remind myself that I’d rather have my friends and family ask or say something that, to me, is insensitive or ignorant instead of them being in the camp that doesn’t know what to say so therefore avoids me altogether. When I’m up to it, I try to educate them or fill them in briefly on the latest and greatest and then do the old conversation switcheroo and put the spotlight back on them. I mean, don’t most people just want to talk about themselves anyway? ( I say that lightly and kindly.) And then everyone is happy. 🙂

    But it sure feels good to vent with those who understand exactly what we mean. This is right on. Excellent post. And the part about House made me laugh. Thanks!

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    • I agree Angelea, There are many things here that were said that I didn’t even realize bothered me until it was said. Yeah, it bothers me that I have a couple of friends (family) that ALL they do is send me a text or email…one line…how are you? I’ll answer tell them what they want to know, the I’ll try to add something else, something else about me, and ask about them…I’ll get…doing ok here…but that’s all. It’s almost like no interaction at all. Recently, I just started writing, “doing better, you?” or “had better days. how are you?” and that’s it. Why waste my time on trying more…after months of this?

      But I do appreciate those who ask me how I am, but ask other things too. Who respond to my responses. I have lost quite a few people who just seem to avoid me now, or think I’m brushing them off because I can’t do something. Really?

      wow, didn’t know you had twins…almost triplets : ) You mean a boy and a girl can’t be identical? haha I have a 2 good friends who gets the same thing, they both have twins, one has a boy and a girl, the other has two girls…obviously not identical. I can’t believe people would have the nerve to ask you if you had IVF, unless they know you really well…but then they’d already know. Wow.

      you have such a good attitude, I’ve learned so much from you. wendy

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  3. This was a great post! Great Job Allison! I have an infant who has something going on and it will have been a year of being bounced around to different doctors. I hear a lot of the same questions as you mentioned, as the mom. Surprisingly, even I have heard the House reference. I’ve never watched the show, so I just nod and move on. It is challenging to not know what is going on with my child, and eventually we will get to the bottom of this problem. Thanks again Wendy and Allison!

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  4. I’ve noticed a few other things that just make me shake my head, or cringe when people say it.

    Don’t get me wrong, I’d rather hear something than nothing, and know people often don’t know what to say, and say what they’ve always heard. It’s ok, I just wanted to get it out, why these things bother me.

    For example, “You don’t deserve this.” Why would anyone think I thought I deserved this? Why would anyone deserve this? Really, you don’t need to remind me that I’m going through something I really don’t deserve. I know it. But it happens, and it’s happening to me. If not me who?

    It also bothers me when someone says, “It will get better.”, or “This too shall pass.” How do you know? Did some divine spirit give you inside information? I have a progressive disease. By better, do you mean how I’m feeling right this second, yeah, that might pass, but will I get better, back to “normal”, be more like you? Probably not. This is a part of who I am now. We just have to accept it, and move on.

    Ok, enough ranting for today.
    Honestly though, if people say these things, I don’t get upset at them. I understand they just want me to feel better. And that’s great. It’s just sometimes, certain things, make me think…you really have no idea. Thank goodness you don’t!
    wendy

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