Wednesday, July 11, 2012

The Stigma of Chronic Illness

There's something about having a debilitating chronic illness that, for many of us, is something we try to hide from all but our closest friends and family.

And sometimes even from them.

Even if we don't try to keep the illness hidden, we minimize it, we make excuses for why we can't do something that our health doesn't allow us to do.

Why is that?

I've known two people with Type I Diabetes who kept it hidden until they had a health crisis they couldn't hide. The first, a college friend who, when asked why she hadn't told anyone in our circle of friends which included several nursing and pharmacy majors, said she was afraid we wouldn't like her if we knew she had diabetes. The other, a man I worked with, made me swear I wouldn't tell any of our co-workers.

It took me 20 years from that first episode in college to understand why someone might want to hide their health issues, whether from friends or employers or acquaintances.  It takes courage to be like Jenni Prokopy of fame or Laurie Edwards of A Chronic Dose, both of whom live their chronic lives out loud on the internet.

While I am fairly honest about what's going on in my life here on my blog, I do it with the knowledge that most of the people I come across in my daily life aren't going to bother to google me and find Sick Momma. Kind of like hiding in plain sight, I guess. :)

My friends know I have health issues. I allude to them on Facebook, and sometimes even whine there when I'm in a particularly bad place. But I rarely share the gritty details of the limitations I live with unless I'm forced to, like when we attended a children's theater with friends last month on a day I should have stayed in bed. After the play, they wanted to walk several long, and hilly, city blocks to get some frozen yogurt, and there I was in the awkward (and slightly panicky) position of trying to quietly let my husband know I couldn't do it. Another mom overheard part of the conversation and suddenly everyone wanted to know what was wrong, and I was in the position of trying to explain that my arrhythmia was causing major shortness of breath combined with intense fatigue and, well, I simply couldn't walk to the yogurt place. It sounds silly reading it here, but at the time it felt an awful lot like standing naked in a crowded room of well dressed people.

There's something intimate about sharing with others the various ways our bodies have broken down and no longer work properly. It means letting people see the man (or woman) behind the curtain, with all their human frailties showing. It means letting them see behind the social facade we all keep.

I can't help but think that there's a stigma attached to having chronic illness(es), that having health problems is a sign of weakness in our moral fiber, somehow. We celebrate cancer survivors, so why don't we celebrate people living with lupus or multiple sclerosis or any of a thousand other chronic illnesses? Why do people who are sick feel like it's something to be ashamed of, a personal failure?

This post was inspired by a NYT article on how people often keep their Parkinson's diagnosis a secret, sometimes even from spouses or children, and how that may be hampering the search for better treatments.


Sherril said...

Great post, Aviva! Have you heard about this year's Invisible Illness Week?

I think many of your posts would be great choices as Guest Blogger.

Sometimes I find some of the II Week stuff to be not as secular as I feel comfortable with, but there's lots to pick and choose from and some years they seem to try harder to appeal to a broader base (beyond Christianity) than other years.

Aviva said...

Hi Sherril!

Thanks for the kind words! I appreciate the thought -- I do think Invisible Illness Week is a great thing (while I also might prefer it were more secular, I can't complain too much since Lisa puts an amazing amount of work into it).

I like her idea for this year. I'll have to ponder how, exactly, I can participate. Thanks for the reminder! :)

Sjogrens Style said...

I was nodding quite a bit while reading your post, but this part hit especially close to home: "it felt an awful lot like standing naked in a crowded room of well dressed people." Perfectly phrased.

Aviva said...

Thank you, Elisa! I appreciate your leaving a comment to let me know the post resonated with you.

Anonymous said...

Aviva, This post says it all. When I was first diagnosed in 2001the medication I needed to take put 40+ pounds on my small frame. That was when I would get looks from people like I was "the naked person in the room"! I just knew they were thinking I looked terrible because I was so heavy, not because I was sick. After all these years I rarely mention my illness, I feel that some friends are just uncomfortable hearing about it.

Medical Mojave said...

I can identify with this. I keep FB completely devoid of health info b/c of fear of future employers using it against me. But I will allude to being sick with a 'lung bug' here and there.


Joan said...

And then there are those of us who ALSO have things that they hide but care enough to check into your blog. But we don't mention what we read too often....because we want to give you the "normalcy" that hiding in plain sight offers.

Aviva, the cause is different, but the outcome is not different from having a child with a disability. I have my own language that I use. I cringe if we're having a very bad time here at home and I have physical signs from it that can't be hidden.

We do it because if we wear our reality on our sleeve - or just be plain spoken about it - others pity us or call us whiners. One or the other, usually. they offer suggestions that aren't appropriate (can't you send him to the group home?). It's easier to pretend to be as normal as you can be and avoid the (well intended) pity party.

It used to make me sad or uncomfortable to say, "No, I can't do that." or "That's not a good choice with A. along." but it's my reality. I dont' explain why unless asked. But I just say I can't. It makes my world small, but it makes A's life manageable.

You're not alone. And we do read. We just don't tell you.


Suzy said...

I guess in a way I'm lucky. Although I have multiple invisible illnesses,one of mine came out in a very public way. I'm a rape and incest survivor. At the time, I was in charge of a Pregnancy Clinic. The ministry I was involved in was in the midst of educating the volunteers on sexual abuse. In the midst of showing them a movie on sexual abuse, I had a flashback. Wonderful, now at least 100 people will know of my invisible illness. But you know what? It is freeing to have it out there. If we are open about it, with out the fuss and muss, we can normalize illnesses a bit. And then maybe we can be accepted.

Joey said...

Hi Aviva. I've been reading a few of your blogs and this one really hit close to home. The comments above really resonate, but I find that the dynamic of being a male with chronic illness is a unique stigma that isn't discussed nearly enough.

Like you, I mentioned my illness on my FB and twitter, but much of it is done in the spirit of impression management. I spent years trying to get my best friends to understand, but almost a decade into my illness, they've barely scratched the surface. They only understand things in their-world terms: "gluten free" "so you're sensitive to pollution huh" "oh I'll drive if you're tired."

I'm also thankful for the bloggers such as Lauri & Jenni whom speak so openly about their struggles. Without transparency, certainly the rest of us have less blogs that make us go "HA! so we're not alone!" But I also appreciate everyone that tries to share however much they can, without wearing their entire lives on their internet sleeves. I'm in the latter group, but I try to make as much of a difference as I can despite that.

Great food for thought. I look forward to reading more.

Anonymous said...

I found you through blog hopping. This really hit home for me. I've had CPS called on me because my daughter mentioned to my ex's new girlfriend that "Mommy sleeps a lot, and takes a lot of pills." If that's not a reason to hide, I don't know what is!

I recently married a wonderful man who adores me, and I like him a lot. But to be frankly honest, it was mostly so that I could have another responsible adult in the house. Sad, huh? (I pray that I come to love him as much as he loves me and my daughter. He deserves it.)

Aviva said...

Anon: Oh my goodness! I'm so sorry you went through that -- how awful! (I cringed when, in preschool for a father's day project, my daughter said, "My dad drinks a lot." He does -- things like milk, water, pop. But no one tried using that against us in any way.) I hope you and your husband have a long, happy life together, and you find yourself falling in love with him as time goes on.

Suzi: Good for you for finding the silver lining. :) But oh, I feel for you in that moment.

Joey: The gluten-free = pollution free just made me laugh. Thank you. :)