She's a character, she has opinions.

Do you downplay your chronic illness?

with 9 comments

I wondered recently if I downplay my illness. A friend said she thinks it’s easy to downplay chronic illness because “stating it how it is can just sound ridiculously dramatic.” She’s so right!

This isn’t an issue of trying to avoid the stigma of chronic illness and disability–though it easily could be. It’s an issue of feeling as if I couldn’t possibly be believed if I told people just how bad it is.

What would you say if I told you that during this particular MS exacerbation my cognitive issues are so bad they remind me of my grandmother and great-grandmother when they had Alzheimer’s? What if I told you that I can walk less than 100 feet and that I have to use a cane and lean on a wall to do even that? That often my hands shake so much I can’t write or type? And if I told you I spent all of yesterday in bed, physically exhausted, just from going to the doctor the day before? Does that sound real to you or does that sound like someone exaggerating?

Here’s a reason why I might downplay all of this: I tell people I have multiple sclerosis and they don’t realize what it means. They think I’m sick, like you’re sick, that I’m sick now and will be well soon. They don’t understand there is no well soon. They don’t understand this is permanent.

Usually I look for the happy medium. Should I explain more? Better? Is there a way to be understood? In my experience, no, there isn’t. The people who want to understand will listen and read. The people who don’t will forget they’ve even been told. That’s all there is to it. So I’m learning to be grateful for those who take the time and to not let the others bother me.

Advertisements

Written by tldegray

February 6, 2013 at 4:49 pm

9 Responses

Subscribe to comments with RSS.

  1. Indeed. And, it’s not just a matter of being believed, but also of being perceived as whining or seeking comfort. Meaning, if I just dryly state how much I can or can’t do, people may (believing me and with good intentions), say, “aww,” or otherwise sympathize.

    Sometimes I am feeling down and want that (and online it can be hard to tell), but other times, it’s just a matter of being honest and matter-of-fact about my limitations. And it can be slightly frustrating, because sometimes I want to just be able to say, “This is what I can do, no more,” and have people accept that without making it an occasion to feel sorry for me.

    Others treating my day-to-day reality as if it’s awful and unthinkable can make me more circumspect and downplay it, as you say, on the occasions when I’m really not making a play for sympathy.

    Am I making sense? (Brainfog makes it hard to tell today.)

    caia

    February 7, 2013 at 4:57 pm

    • You’re making total sense to me. It’s such a treat to be able to state what’s wrong and have people accept it. No more, no less. And it’s a treat because unfortunately it’s rare.

      tldegray

      February 7, 2013 at 6:36 pm

      • Well, I think we’re socially conditioned to offer sympathy when we have nothing else — and sometimes I want that, so maybe I’m asking my interlocutors to be mind-readers.

        I also hear you about some people never getting it. It can amaze me how much time I can spend with somebody, and have them still be surprised at the basics, whereas other people I rarely see catch on quickly, and even anticipate me.

        caia

        February 7, 2013 at 9:16 pm

  2. I have downplayed my illness and even though recently I have tried to do my best to be a little more open about it, I am still not comfortable about it.
    Because I have had PHN for 10 years now and it is so extensive that there is no getting better, it is hard for people to understand. If I try to explain, I often get “well, I know someone who had shingles and they were fine” or “you just need to use xyz and you’ll be better”. I feel like I have to justify my illness, the treatment and my decisions and it is exhausting.

    I think that it is also because I feel like my chronic illness is very personal and I don’t want to define me – even though it dominates my life. Other times if want to give people a reality check and tell them to appreciate what they have when I struggle to get through an hour without wanting to curl up into a little ball and cry…

    Nicola (@craftybookworm)

    March 11, 2013 at 8:35 pm

    • It’s hard to deal with. I tell people that chronic illness is a full time job and that covers all these thoughts, in addition to actually being ill.

      I’m very open about my illnesses–as you may have noticed from reading. 😉 Part of it is because I want the rest of us out there to see what I say and realize for a minute that they aren’t alone. Part of it is me excising my own sense of shame over not being “normal” (whatever that is).

      tldegray

      March 13, 2013 at 2:00 pm

      • I had one of those ‘get out of my head’ moments when you mentioned shame, that is one of my big stumbling blocks. The older I get and the more my contemporaries do the normal kids/house/career/marriage thing, the more I feel like I am not normal. My counsellor told me to watch this video by Brene Brown about shame, and I found it really useful http://www.ted.com/talks/brene_brown_listening_to_shame.html
        Being sick is a continual exercise in acceptance, just when you think that you are in control, *pow* something comes along and you end up doing it all again.
        PS Thanks for talking about PHN, it’s nice to know that I’m not totally alone 🙂

      • I say, screw shame. I may feel it at times but boy do I ever fight it when it comes along. We have nothing to be ashamed of. (Obviously I have powerful feelings about this. 😉 )

        You’d be surprised how many people have PHN. I was when I started blogging about it and all of a sudden so many people were saying “I have that too!” I wish I knew why PHN in particular is so hidden. (If you read some of my past blogs on the subject you’ll see other people in the comments who have it too. It’s nice for me just to know they’re out there.)

        Being sick is a continual exercise in acceptance
        You’re right, every single time I think I’ve got this something happens to disturb my equilibrium. I sometimes say it’s like starting over every single day.

        tldegray

        April 8, 2013 at 8:06 pm

  3. Nicola, thanks for linking that TED talk; I’ve downloaded both Brown’s talks and will watch when I can.

    I also hear you about having people question all your treatment decisions once they know what’s wrong with you, whatever that is. Once or twice in my life I haven’t actually minded explaining my life to a new friend or acquaintance, but mostly, DNW.

    I don’t necessarily want others to look at me and go, “There’s that woman with the chronic illness,” but for myself? Unfortunately I often feel like my illness does define me. 😦

    (If you see this, also know I have/am missing most of those adult milestones too.)

    caia

    April 10, 2013 at 8:36 pm

    • Brown’s talks have really shaken me up. Thank you.

      caia

      April 12, 2013 at 9:59 pm


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: