October 27, 2011

I’m going to spend four wonderful days, starting in a few hours, away from computers and the internet.  Doesn’t that sound heavenly?  Ok, from some people it might be tortuous, but I can hardly wait.  I won’t be posting anything for a few days, but I promise I’ll be back to posting by Monday.

The me behind the masks

October 27, 2011

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?

How do you talk about what’s behind the mask without first figuring out what the mask is?  I tried, but I couldn’t do it.  That’s why I wrote this post yesterday, describing the masks I wear.  As for what’s behind them, that’s harder to write about.  I’d almost rather sing in public than really examine this.  Almost.  Really, I’m a horrible singer.  Just terrible.  But moving on…

Me, Myself, and I

I’m generally a happy person.  I have great family and amazing friends and a lot of love in my life.  I do get lonely, though.  The illnesses make the loneliness worse in some ways.  Because of the illnesses, I put up walls.  After all, who would want to be with someone like me?  I try to remember that we all have baggage.  And I know that plenty of women with CIs find love and get married all the time.  Still, the pessimist in me wonders if it will ever happen.  There are also a lot of lonely days when the CIs force me to stay indoors.  I live alone, so I end up not seeing people.  I prefer to be alone when I feel lousy; I don’t want my friends or family to see me that way.  But a spouse would be different.  A spouse would be really nice to have around, actually.  And it would be nice to have someone to share things with, to take care of me when I feel lousy, and for me to take care of too.


I get frustrated.  I didn’t realize how frustrated I am until I started this blog and I noticed myself using the “Frustration” tag an awful lot.  My frustrations are because of the CIs, but they affect life in larger ways.  I would love to be able to ride a bike, for example.  It would save money, it would be great exercise, and it would be a much more pleasant way to commute to work.  Chances are good that I’ll never ride a bike again.  I’d like to go sky diving too, but that seems unlikely in the near future.  I can’t run or hike or ski.  These are all things I would do if I could.  And then there are the normal activities we all do every day.  Some days I can do them and some days I can’t and it’s all so unpredictable that sometimes I just want to scream.  So yeah, I get frustrated.


I hide behind those masks and let myself appear to be strong and healthy.  Behind those masks, I project an image of invincibility, even though I’m anything but.  People who think they’re invincible tend to get into trouble because of it, but everyone has that feeling at some point, right?  Well, not everyone.  I wasn’t born with my health problems, but they did start when I was young.  I was a child, going to school, asking my parents’ permission to play with friends, needing my parents to take me places back when it started.  I never got to enjoy that invincible feeling at a time in my life when I could try it out.  I wonder sometimes what that feeling would be like.  I’ll never know, and that’s ok.  It’s definitely not the worst part of this.  But I do wonder.  And when the mask comes off, it’s more obvious than ever that that’s one super power I’ll never have.


Not that I let other people see it, but I get scared.  Sometimes I’m scared of a particular set of symptoms, sometimes it’s an overall fear.  How will I handle this for the next 50 or 60 years?  How will I support myself when I can’t work?  Who will take care of me when I can’t take care of myself?  What if I slip on the ice and sprain my ankle?  I can’t use crutches because of my poor joints, and my apartment building is not wheelchair accessible.  What would I do?  I try not to let the fear take over too often.  Sure, there are some days when it’s especially bad, and I let myself just feel it.  Then I brush it aside and move on.  Fear is not a productive emotion, and it’s draining, and there’s really nothing I can do right now to prevent what might happen later.  I guess I wear a bit of a mask even when I’m alone, because I try to ignore the fear, but it seems to work for me.


It’s not all negative.  Really, it’s not.  It’s easy to focus on the bad stuff, but there’s good stuff too.  I often feel at peace.  There’s a lot in
life that I’d love to change, but the CIs have taught me to focus on the good things.  I appreciate the days that I can walk without pain.  I’m very aware of the abilities I have now that I didn’t have just a few years ago.  I can let a lot of life’s little annoyances roll off my back because I see the bigger picture.  (Exception: bad drivers; they get under my skin every time.  Really, is it so hard to signal before you turn?)

Related to being as peace, I also feel very grateful for what I have.  For some of it I worked hard, and for some of it I’ve been incredibly lucky.  About 99% of the time I manage to remember that.

The other 1%

No, this isn’t an Occupy Boston comment (and if you don’t get it, read the headlines of any newspaper.)  This 1% would be the rare times when I lose sight of the good stuff.  Most days I’m happy despite the illnesses and their symptoms.  Some days I struggle, but I remember that there’s a lot to be grateful for (see above.)  And yes, occasionally, around 1% of the time, I feel like it’s hopeless.  I get depressed.  It might be a symptom of the illnesses or a result of having to deal with the symptoms.  Some of the time it has definitely been a side effect from the meds.  I always come out of it sooner or later, but in the meantime, it’s easy to forget all the good things in my life when I’m surrounded by pain and fatigue and all the rest.

Drumroll, please….

So what does all of this add up to?  In the end, I’m a woman, just like any other.  I spend time with family and friends, I go to work, I run errands, I date (sometimes more in theory than in reality, but still.)  I’m sarcastic, loyal, caring, nerdy, protective.  When the mask comes off I can stop putting on a show for people and just be the real me.  It’s easy to get used to the masks and forget who “me” really is, but sooner or later, she always appears.  I like her.  I hope you do too, because I think she’s going to be around a lot more.  I’m getting tired of the masks.  What about you?

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.

Setting chronic illness goals

October 24, 2011

What’s your CI goal?

We all have different goals, of course.  There are the big picture goals, the ones that shape our lives.  For me, that’s spending time with family and friends, dating, keeping a full time job, and taking care of myself while living alone.  Some of these are easier than others at different times.  Sometimes these feel impossible.  But so far, they’re all doable.  Ok, maybe I can’t do them all simultaneously, but I’m working on it.

And then there are the illness-related goals that focus on the symptoms.  For me, that’s reducing the pain, finding ways to better relieve the pain when it hits, reducing fatigue, and removing weakness.  I suppose I’ve had these goals for so long that I’ve just taken them for granted.

Over the weekend I was talking with a friend who suffers from severe chronic pain.  She’s been using a form of exercise to try to ease the pain.  She told me that it started to work better when she stopped using it to get rid of the pain and instead thought of it as a way to reduce the pain.  I was shocked!  It never occurred to me that she was trying to get rid of the pain completely.  I guess it wouldn’t have mattered – I couldn’t have talked her into anything different because she wasn’t ready for it yet.  Still, I forgot what it was like to have hope that despite everything, it might one day go away.  I stopped thinking that way many years ago.

I’m happy for my friend that she has this new outlook.  Now, any reduction in pain is a success.  Maybe it will go away completely one day, maybe it won’t, but for now, she won’t feel like she’s failing at “curing” her symptoms.

I learned a long time ago that my pain would never go away.  It took a long time to accept that reality.  And then it went stopped!  I still have pain, but it used to be 24/7, and now it’s only on and off throughout any given day.  Some days I can almost ignore it completely.  This huge, amazing, unbelievable!  So I’m keeping an open mind and I know that anything is possible.  Still, my goal isn’t to get rid of any of my symptoms (except the weakness, which is almost definitely temporary.)  If I just focus on reducing them, then maybe they’ll go away and maybe not, but at least I could get to a point where they were liveable.  If I can live with them and still meet my big picture goals, then that’s good enough for me.  Hell, forget “good enough,” I’d be dancing in the streets with joy.

What about you?  What are your goals?  I’d love to know.  Make a comment below or send me an email.

Sharing… or not

October 23, 2011

I have to admit, I was feeling totally uninspired yesterday.  Sure, I could have written something.  I had plenty of topics.  I just didn’t feel like writing about any of them.  Then last night, I found myself getting plenty of inspiration.

I want to a small party where I knew some of the guests and didn’t know others.  Of course, a common question is, “What do you do?”  I had no problem answering that when I was simply unemployed.  For some reason, though, answering it now feels awkward.  I have a job, but I’m not working at it.  I was saying something about Friday and not being at work, and someone questioned me about it.  How do I answer?  My friends know what’s going on, but I don’t feel like discussing it with acquaintances or strangers.  Besides, the followup question would be to ask what health problems I have, and this is a party.  I really don’t want to talk about it at a party.  So I was vague.  Still, it felt awkward.

More awkward than that was the person who asked what allergies I have that cause me to ask about every ingredient in every dish.  I finally told her I have IBS.  It turns out, she has IBD.  Ok, similar but different.  She then proceed to tell me all about a book she had just read, and the diet it described.  Oh boy.  At least she has a similar condition, so that’s better than when people with no idea what they’re talking about decide to give advice.  But again, this is a party.  I don’t want to talk about symptoms and treatments.  I know she meant well, but it was too much.  I kept trying to change the subject, and she kept bringing it back around.  I think it’s worse when the person is well-meaning, because I don’t want to be rude.  Still, this is my life and my body and I really don’t need every Tom, Dick, and Jane advising me on it.

It was an interesting evening.  I had fun for the most part, but it was a good learning experience, especially for my new work situation.  In terms of the bigger picture, though, it was a huge success.  I spent over an hour baking, then rested, and was able to go to the party and feel good.  I was in pain from standing so much while we all talked, but I was able to do it.  I got down on the floor a bunch of times to play with the new puppy.  I didn’t have to leave too early.  Yes, this was definitely a successful evening!

An overly-cluttered slate

October 21, 2011

Posting to this site every day has been easier than I expected.  Of course, I have a wealth of material.  It’s not as if I was writing about some obscure topic; this is my life, so examples and topics are pretty easy to come by.

There are days when I’m stuck, of course.  That doesn’t happen much, but from time to time I just can’t think of anything that I want to write about.  More often, I have days like today when I can’t narrow it down.  Today I could write about odd genetic traits (having too much earwax runs in the family) or about big decisions (should I finally move to a more temperate climate?) or about friends who don’t get it (I was asked yesterday if I’m enjoying my “break,” as if a medical leave of absence was just a long vacation.)  Yes, there are many topics I could write about today.  I’m sure I will explore all of those at some point (I’m sure you’re at the edge of your seat, waiting to hear about the earwax) but today won’t be one of those times.  Today is an off day.  Today my brain isn’t interested in writing or exploring.  Today I’m going to let my thoughts glide over all of these topics without thinking too deeply about any of them.

We have to be sick every day.  We have to think about it every day.  We have to handle the symptoms and manage our lives around them every day.  So today I’m taking a day off from deeper thought.  I’m sure it’ll come back to me tomorrow.  For today, though, it’s nice to take a small “vacation.”


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