Tuesday, July 31, 2012

Adding Insult To Injury: What It Means To Be Visible

Well, in some ways it’s adding injury to injury.  Just a few weeks after displacing my knee cap and needing physical therapy, I rolled my ankle in such a way that I sprained my foot.  So I am on crutches and in a boot for about the next two and a half weeks.  And of course, it couldn’t be the ankle of the same leg that was already injured.

But that’s actually not totally the point of this post.  This post gets at something deeper.

I’ve become visible.  For once, I am noticeably injured/in pain.  I’m usually pretty good at hiding my pain from the outside world, but this is not something so easily concealed. 

It turns out that the world is a surprisingly nice place; people hold doors, give up seats, ask if there’s anything they can do for you.

I was even told that I could take advantage of University’s para-transit to get me around campus since I don’t have a car.

For all the days that I’ve dragged myself around, often feeling nauseous, dizzy, my entire body in pain, sometimes feeling at death’s door, only those who really knew me made any effort to help or showed care or concern.

And yet, when I’m on crutches and in a boot for something that is by any standard less severe than my chronic illnesses and much more acute (as it will hopefully be all healed in a few weeks), the reaction of others, total strangers, in fact, has been non-stop. 

I see the pitied looks I get while hobbling around.  I watch as some people avert their eyes and look away. 

Look anywhere but the gimpy girl. 

This shouldn’t surprise me.  I know firsthand what it’s like to live with an invisible illness/disability.  But the point was hammered home to me due to this latest turn of events.

I am insulted by my body’s fallibility these days. 

But I’m also insulted by the fact that a minor injury – although I am fairly out of commission right now – gets so much more air time than something that could potentially kill me.

So on one level, I get it.  I guess what others can’t see, can’t hurt them.  So for the outside world, my chronic illnesses are a non-issue because they don’t exist to others.  But on another level, I don’t get it because my chronic illnesses exist to me in a very real, profound, and life-changing way. 

I would venture to say that, at times, I have been less able than I am now, even in a boot and on crutches, just in a different way.  When every step hurts because you have lupus and rheumatoid arthritis, and just lifting your head off the pillow and getting out of bed expends all of your energy for the day, hobbling along doesn’t seem so bad.

It’s all relative.  I’ve never been on crutches or in a boot before.  Crutches are truly a pain in the butt (and arms and my other leg).  They are exhausting.  And I hate being cooped up – no kickboxing or volunteering for this girl – and trying to heel up before my two big trips, so I won’t have to worry about having to deal with airport security in this regard. 

But honestly, I think I’d rather deal with this for a little while than deal with lupus and rheumatoid arthritis all the time.  This will pass.

For me, something that is temporary is in the spotlight for others.  And for me, what is not temporary, is barely paid attention to by others.  It’s sad.  Sad that we live in a world where only the immediately apparent is paid attention to. 

When I went to the doctor for my foot, the doctor I saw asked me if I was on any medications.  After every one, he would ask, “anything else?”  And resignedly, I would say “yes.”  As I went on with the litany, he asked what I was taking the meds for.  I told him because I have lupus and rheumatoid arthritis.  He asked if arthritis ran in my family and I said “no.”  His response was, “Oh, so you just got lucky?”

Well, I wouldn’t exactly call it luck.  And unfortunately, I do think that this injury is made worse by my arthritis.  For one, my left hip, which is the “good” one, started hurting yesterday, probably because I am using it so much right now.   And I have joint and muscle fatigue from using the crutches that I wouldn’t have if it weren’t for my chronic illnesses. 

I also think that I tend to push my body a bit too hard, and let both the (left) knee and (right) foot injuries go because I’m so used to being in pain and figured they would resolve on their own.     

And they’re the main reason that I’ve been prescribed three weeks on crutches and in the boot, because the doctor thinks it will take me longer to heal with all my other issues. 

And I guess, really, this is the crux of it.  The crutches and the boot are a symptom of a bigger problem for me.  In a way, they are just a visible, outward manifestation of my bigger health problems.  For most, this acute period will end and they will be able to go back to their “normal” lives.  For me, when this acute period ends, I will still have plenty to worry about. 

In some ways, invisibility can be a blessing.  You don’t have to explain yourself all the time and don’t have to deal with people’s uninformed reactions.  On the other hand, though, I think invisibility is really a curse.  I feel like you have to do way more explaining, and even then, people won’t always believe you or are able to understand.  If you’re having a down day, most people won’t know why.       

With visibility comes recognition, although not necessarily understanding.  But just as visibility can bring positive attention, it can also bring negative attention.  You can’t hide, even if you want to, because you stick out like a sore thumb.  

I find that rather than wanting to hide, I want to shout it from the rooftops.  I’ve said several times recently that I wonder if I should tattoo lupus and rheumatoid arthritis on my forehead so I wouldn’t have so much verbal explaining to do.  Because I get very sick and tired of having to explain, even to medical professionals. 

But who knows?  I might miss the crutches and boot for the recognition that they bring, if nothing else.  


  1. Wow - this post really hit home for me. It's so true how people can make such a huge fuss over a visible injury - that they know will heal. Yet when you're chronically ill, they either don't know, or they won't have a bar of it. Partly because I don't think they want to acknowledge that pain is not always temporary. I broke my foot and had crutches - I know what a pain in the butt they can be!! I do hope your foot heals up as well and as quickly as possible.

  2. I can sure relate.

    My mom, who died in 2005, would always say that she wanted her epitaph to read, "I TOLD you I was sick!" I'm thinking I may use her line.

  3. I had to chuckle at the tattoo on the forehead comment. I've often said that I wish when I get dizzy (MY invisible ailment) that I would develop big purple spots so the rest of the world would understand that I look miserable not because I am just tired, in a bad mood, etc. Once again, I've truly enjoyed your post.

  4. I can totally relate! I have psoriatic arthritis, and limp around a lot. But when it's visible, it's just different. Some days I don't want people to notice. On the sunscreen...I'm allergic to many things. Vanicream sunscreen and the screen from VMV hypoallergenics are the only two I can use. I just wish I could spray it on! Melissa

  5. I think everybody's had a sprained ankle or a torn muscle in their elbow...you see people walking around all the time with crutches and braces. People can relate to that in a way I don't think they can with autoimmune disease. I like being invisible, it's hard on bad days when I'm limping and have to use my handicapped parking card and I know everybody's looking at me. Yesterday was my first day getting screamed at for using a handicapped spot, I guess I wasn't limping quite enough to "pass" as someone outwardly disabled, sigh. Thanks for sharing your story, feel better soon!

  6. I've always said that it would be better to have a pain everyone could see. Otherwise after a while everyone just things the pain is in your head. Frustrating, but the road I travel. Maybe we should wear a boot just for the fun of it. Ha!

  7. I hear you! My husband is a wonderful man- but sometimes I feel like the doc should write me a script for '45-minute nap a day' as part of my treatment- I'm not being lazy! I want to stay as well as possible!

    ...I wrote about lupus the other day- any advice from your experience would be great! http://remnantofremnant.blogspot.com/2012/08/lupus-sjogrens-7-quick-takes.html

  8. nice blog i like tattoos designs but i can't get one because i have heard it hurts too much .