The many masks of chronic illness

October 26, 2011

This week’s Chronic Babe carnival topic is “behind the mask”.  The full description is at the end of this post.

Hiding.  I am amazingly good at hiding.  But we all wear masks at least sometimes, right?

I do it in plain sight, of course.  I’m standing right in front of you and you have no idea who I really am.  I’m often told I don’t “look Jewish,” whatever that means, and so people assume I’m not, even though I am.  Supposedly I don’t dress in a particularly queer way, so people assume I’m straight, even though I’m not.  And at a glance I appear to be healthy, so people assume that I am, even though I’m not.  In the first second of meeting me, people make all of these assumptions, and I don’t always bother to correct them.

Sometimes I feel threatened.  If I overhear a homophobic comment I’ll say something if it feels safe.  If the person appears violent, of course I keep my mouth shut.  With my family and friends, though, I’m completely open.  With the illnesses, it’s entirely different.  With that, I never let my guard down, not even around my closest family or friends.  Some of the reasons for this are obvious and some aren’t.

For one thing, I don’t like to worry anyone.  This may sound silly to some, but it’s really big for me.  I feel horrible when people worry about me because there’s nothing they can do.  If there’s a way for them to help, I’ll ask for it.  If they can’t help, then why should I upset them?

Then there’s the hypochondriac issue.  I have so many health problems that if I talk about all of them, people will think I’m making them up.  No, really, they will.  It’s a bit ridiculous.  So I keep my mouth shut.

The Office Mask

And of course there’s wanting to appear like I can do everything I’m supposed to do.  This really only comes up at work.  I got over the desire to “appear strong” a long time ago.  I don’t mind people seeing my weaknesses.  The one exception is my boss.  She clearly doesn’t get what I’m going through.  I let her see little bits and pieces so it’s obvious there’s really something wrong and she’ll approve the accommodations I ask for, but at the same time I want to make it clear that I can get the work done.  That was going great, until I needed to take a leave of absence.  But even up to the day I left I wore the mask as much as possible.  I didn’t know how to do it any other way.

The Stranger Mask

Walking down the street, I try to keep it together.  I don’t care too much what strangers think, but I feel like a big limp makes me a target when I’m alone late at night, and looking haggard is just unpleasant.  And it won’t help my dating situation (I once got picked up in the grocery store; it can happen.)  But when I really feel lousy, I just don’t bother to hide it.

The I-sort-of-know-you-but-not-really Mask

Then there’s acquaintances.  At social gatherings I wear a huge, thick mask.  I try to act like everything is fine.  When someone questions my obvious food restrictions, I brush it off as allergies.  My limp?  Just a small injury.  My wince of pain?  Oh, just a sore back.  I must have slept funny.  The truth?  Not a chance.  I don’t want to talk to strangers or acquaintances about my health unless there’s a really good reason, and letting on that I have even a small problem usually seems to segue into the full deal.  Who needs that when you’re trying to have fun?  Having fun is so much easier when people don’t think of me as “poor Ms. Rants” or “the sick one.”

The Huge Family & Friends Mask

The biggest mask of all, the one I really can’t seem to put away, is the one I wear in front of the people I love most.  Like I said, I don’t want to worry them.  I also don’t want their concern to color our relationship.  I don’t want it to be all about my illness.  If I’m having a really tough day or week then I let on, and they’re always there for me.  But the rest of the time, it’s more of a background thing.

I recently had a friend get on my case for it, actually.  She can tell when I’m hiding something, and then she worries that it’s something really horrible.  So I’ve tried to open up and tell her more.  The crazy thing is, after all these years, I don’t know how!  I’ve been wearing masks for so long, learning to fake it through pain and fatigue and nausea, that I can’t remember how to share it all.

Pulling the Mask Off

My health problems started as a child, and even then I learned quickly I had to be careful who I told and how much I told.  Now, twenty years later, my first instinct is always to cover things up.  And when I’m alone, the mask is still there, only now I’m hiding my emotions from myself, and only occasionally I’ll take it off.  I’m very aware of the physical problems.  At home I’ll collapse on the couch and watch tv for hours or take three hot showers a day to try and warm up.  Alone I don’t try to hide the limp or the bags under my eyes or my pale, haggard look.  I just try to hide from the fear.  Every now and then, very rarely, I’ll allow myself to face the fear, the uncertainty, the permanency.  And sometimes, very few times, I’ll cry.  And that’s when the mask is truly off.

Coming up….

In tomorrow’s post I’ll talk about the real carnival topic: what’s behind the masks.  Who am I when the masks come off?

 

This week’s Chronic Babe carnival topic is “behind the mask”.  As they write:

We know you are doing everything you can to cope with a life with illness and showing your co-workers, family, friends and neighbors that you can manage it. But when you are all alone and your guard is down, who emerges from behind that super-coping ChronicBabe you present to the world? Who is she and what is she most concerned about?


Dissing discrimination

October 25, 2011

Are you discriminated against because of your illness(es)?  Have you seen it happen to others?

I read some tweets yesterday about people who are publicly discriminated against by strangers.  People spit on them!  I was horrified!  Now I’m wondering, is this common?  Have I been blind to it?

Most days I can “pass” as someone who is healthy, or as someone who appears to have an injury.  I have never been in a wheelchair for more than a few hours at a time (in an airport, at a mall) and those times have been rare.  When I was in a wheelchair some people were kind and held doors open, others were rude and verbally bashed me for blocking their path.  Many people were ruder than I would have expected, but I can’t imagine that they would do worse  But then, despite my cynicism, I still tend to give people too much credit.  Sad, isn’t it?  Anyway, most days I have a limp, or maybe have trouble opening a door, but for better or worse, most of my problems aren’t obvious to strangers.  I can hide them if I want to or need to.

So if this really happens as much as the tweeters implied, how have I not see it?  I know that I can be blind to many things in the world.  Sometimes I’m in my own head as I walk down the street, and don’t notice a friend walking the other way.  I drive someplace, and don’t remember how I got there.  I believe the tweeters.  I have no reason not to.  My main doubt is about myself: did I happen to not see a few incidents, or is some part of my brain intentionally ignoring the problem?  Are other people seeing it?  I’m guessing they don’t, or I would have heard more about it sooner.  Either way, it doesn’t matter.  Now that I’m aware of it, I’m going to pay more attention.  I hope you will too.  Have you seen this kind of thing?  Have you done anything about it?  Has it happened to you?

I hope you say no, that this hasn’t happened to you and you haven’t seen it.  But I know the reality.  It’s happened to someone.  My hope from now on is this: that it won’t happen anymore.  Let’s tell our friends and family and political representatives.  Society as a whole needs to have more respect.  It is not ok to treat each other like this.  We need to care about and support each other.  And we need to speak up when we see otherwise.  I know I will.

Note: When I mention speaking up, of course I recommend only doing this when it is completely safe to do so.  Please do not put yourself in danger in order to make this point.


Little things are really big

October 15, 2011

I came across this article in the newspaper this morning, about a local grocery store that is the second in the country to add Braille labels to its shelves.  I never noticed the lack of Braille before, but as soon as I saw the headline, I wondered why it’s taken so long to happen.

Braille labels probably seems like a small thing to many people, but for those who need it, it will make a big difference.  But then, that’s true of so many things, isn’t it?  Audible walk signals at intersections, smooth curb cuts, railings on staircases, ramps…. people who don’t need them just pass right by, but for so many others they make life not only easier, but manageable.  It makes me wonder what else we could, and should, be doing.  Did you notice that the Braille grocery store labels came about because of a first grader?  It’s that young perspective that we all need to have, to question everything, to propose solutions.  Maybe we need to get a group of children together to fix the inequities.  Either way, we definitely should not settle for the status quo.  We need to continue to change things for the better.  There’s always room for improvement, so let’s find the most inefficient areas and improve them.

I’m as guilty as anyone of sitting back and letting others do the work.  I contribute in small ways, but I haven’t stepped up in a big way, at least not lately.  I think it’s time for me.  What about you?

[Note: To get free emails of posts to this site, simply sign up in the top right corner of any page.]


Finicky food “facts”

October 13, 2011

What can’t you eat?  That’s always a fun question.  (By the way, that was sarcasm.)  I love that people care enough to ask, but that doesn’t mean that I know how to answer.  I may be able to each something one day, but not another.  Or I may be able to eat something if it’s paired with the right additional foods (often carbs will help keep my stomach settled) but I can’t eat it otherwise.

Some friends get frustrated with me over this.  They want to work around my food issues, so when they invite me to dinner, they ask what I can and can’t eat.  When I’m vague and suggest that I’ll bring my own food, they think that I’m just trying not to trouble them.  I suppose that’s true in a lot of ways, but it’s also that I just don’t know how to answer.  In the past I’ve tried to give people lists of my
restrictions, but then I’ll forget to mention something, or I’ll be having a bit of a flare, and I won’t be able to eat the lovely meal that they prepared with me in mind.  Then I feel even worse.  I usually just ask them to let me know what they’re planning to prepare, but again, it’s dicey.  They may add an extra ingredient without thinking about it, or they may forget to mention something, and suddenly I can’t
eat the meal.  Why can I eat brie but not feta?  I have no clue.  Why does Thai food make me sick, while all other Asian foods I’ve tried have been fine (and delicious!)?  No idea.  Why does eating dessert one moment make me sick, but 20 minutes later it’s fine?  I can only guess.

In the end, it’s all a guessing game.  Luckily, I’ve gotten better at guessing over the years.  But try explaining that to a dinner party host.

 

[Note: To get free emails of posts to this site, simply sign up in the top right corner of any page.]