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How Many of You Can Identify?

Here is something else I found and thought most of you could identify with since most of us are living with an invisible disease.

Unlikely Chameleons, Living with an Invisible Disease
Posted on August 28, 2008. Filed under: Guest Blogger Articles | Tags: invisible illness, rheumatoid arthritis, lupus, SLE, RA, rheumatic, awareness blogging, invisible chronic illness week |

It’s funny.  I’ve always worried a lot about fitting in, even before I was diagnosed with lupus and rheumatoid arthritis.  About what other people are going to think of me.  More recently, about the visual cues that signal illness.  

Ironically, though, one of the things I really haven’t bothered to hide are the bruises I get from having blood drawn.  Whether it’s two vials or 20 doesn’t seem to matter.  I’m fair-skinned and my prolonged adventure with steroids has increased my bruising ability.  

Similarly, It’s pretty hard to hide a cannula that’s in your arm for three days while you’re getting solu-medrol infusions for two hours each day. Yes, this scheduled in between the final exams and papers of my first year of graduate school.  Just one of the many ironies that comes with being diagnosed with an invisible, chronic illness at the age of 22.  

I know that for some people, my friends included, this is just too much “medical stuff” invading their perfect world of health and harmony.  I know these things don’t make the “typical” graduate student.      

Certainly, though, there are things I have made an effort to hide.  The cystic zits that invaded my formerly acne free face while I was on prednisone was one thing.  I finally decided to invest in some good cover-up, not so much for other people, but for myself.  It’s hard enough to do deal with a changing body, both physically and mentally, let alone a changing face.  

On the other hand, if we can’t show our scars and our wounds, then people are only willing to accept the healthy versions of ourselves.  And being honest with ourselves, this is not always the way things are going to be.  It may be the image we want to project, but it’s hard to project a false image built on lies when we don’t have much control over the situation.  

There seems to be a constant conflict between fitting in and sticking out like a sore thumb.  On the one hand, no one wants to wear their limitations on their forehead, displayed for all to see.  On the other hand, fitting in perfectly and not “looking” ill has its own set of complications.  

Sometimes people don’t believe that I’m sick or they don’t understand the severity of the situation.  People don’t understand why I can’t just take a Tylenol and get over what is ailing me.  I think it’s especially hard for people my age to imagine something lasting forever.  I try to explain that I’ll vacillate between better and worse, but I won’t ever be “perfectly healthy” again.  This is something, that, especially when I appear so seemingly healthy, people find impossible to understand.  

I think what I’m starting to realize is that just as I don’t owe anyone an explanation for why I became a vegetarian over six years ago, I don’t owe anyone an explanation for any of this.  Or why I may look fine, but feel awful.  Do you know how many people have told me that they have friends who have Lupus and “are just fine”?  I used to feel like that was a personal dig.  Like, if other people have this disease and “are just fine,” I should be, too.  But I started thinking that “just fine” is an assumption in the eye of the beholder.  These people may look “just fine,” and it’s not to say that their disease could be in remission, however, it seems to me that the more likely story here is that people think they look fine, and, therefore, assume that they are.  

For those who don’t know that I’m sick, I don’t just go blurting it out for fun.  I don’t usually say anything unless it becomes necessary.  But the truth is, pretend or not, lay it all on the line or keep it all inside, I’m not your everyday graduate student attempting to get a Ph.D.  It’s not an easy thing for anyone; it’s certainly not going to be an easy thing for me.  

Certainly, I hope that I can finish my program “on time,” which is just a euphemism for “before my funding runs out.”  But the thing is, I don’t have the answers for when I am going to be “ill” or “not.”  And with the unpredictability of Michigan weather, it means I’m kind of out of luck as far as “climate control” is concerned.  

Sometimes I wonder, though, if our lives would be easier if we didn’t want so badly to be noticed.  There are times when the ache to be normal is so deep, I would do almost anything for one day of not being ill.  I often feel like I am caught between two worlds.  On the good days, I feel like I don’t quite fit in to the world of the chronically ill, even though I know that for most of us, the severity of our diseases ebb and flow.  On the bad days, I definitely don’t feel like I belong in the world of the healthy.  I don’t feel understood at all.  And it’s on these days that I realize that our need to be noticed and acknowledged is of the utmost importance.  Our silence can have deadly consequences.  

National Invisible Chronic Illness Awareness Week is worth celebrating because it brings awareness and much needed attention to issues that profoundly affect the lives of many people.  

Leslie Rott is 23 years old.  She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in sociology at the U of M.  She currently authors the blog Getting Closer To Myself (gettingclosertomyself.blogspot.com), which chronicles her journey with rheumatoid arthritis and systemic lupus.

This came from:  http://invisibleillness.wordpress.com/2008/08/28/guest-blogger-unlikely-chameleons-living-with-an-invisible-disease/

8 Responses
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Avatar universal
Me again.....I put a comment in on Leslie's post to ask permission to have it on our Health pages.  I will let you know when or if I hear anything back.

doni
Helpful - 0
Avatar universal
Hey Shell, that is a good idea.  All of you should check out this site it has more great stories of people who suffer from invisible illnesses.  It is

http://invisibleillness.wordpress.com/

Wishing all of you a great day

Hugs
doni
Helpful - 0
198419 tn?1360242356
WOW.  I'm so grateful you came across this, Doni.

Do you think there is a way we could post this to our health pages? Would we need her permission? It's so inspiring, and I'd hate for it to get buried. Would like to be able to  read it again and again when we need it.  

Anyone have any thoughts?  Should we reach out to her?

-Shell
Helpful - 0
Avatar universal
This is a very moving piece. I'm far from young, yet still I understand. Since I was very young I've had a hand tremor that could get very embarrassing. It varies from very noticeable to almost indetectable. At times I've had people looking at me strangely, and I know they must be thinking that I'm in alcohol or drug withdrawal, or that I'm very nervous. The "nervous" part used to be the worst when I was young and dating, and I think my dates thought my shaking was because I was trying hard to make a good impression. NOT!

As I've gotten older I've stopped worrying about what people think. There have to be SOME benefits that come with age, and this is one of them. I'm glad of that because the tremor is getting worse. Sometimes I have to use two hands to click with my computer mouse or to get soup from bowl to mouth, and I always need two for makeup. People can make of all this what they wish.

Yet the tremor has its uses. Those who know I'm dealing with MS just seem to assume that the shakiness is part of it. Not so, it's a separate thing altogether (essential tremor). However, I've stopped bothering with going into explanations unless they specifically ask. The tremor is the one thing they can see. They can't see burning or tingling or vertigo or severe pain or fatigue. They can't see the side effects of medications. So this one abnormality gives a (false) face to a bigger and invisible (in my case thus far) neurological disease. So be it.

Thanks for this post.

ess
Helpful - 0
222135 tn?1236488221
Wow, those were absolutely dead-on. I can relate. Wish I had some words of wisdom to add, but "wow" is about the best I can do.

Penn
Helpful - 0
281565 tn?1295982683
doni, thanks for sharing that with us. I did identify with it a lot.

Rena, that was so well written. Have you thought about writing as a career?

We all must be considerate to others as we know ourselves that so much is hidden from view and so many hide the pain that they are in.

Moki
Helpful - 0
Avatar universal
WOW, that was beautifully written.  I thought all of you could identify with this cause we are always talking about MS as the hidden disease.  I hadn't really thought of all the other diseases that don't show on the outside.

I, like you, will be more considerate because no one knows what that other person may be having to deal with on a daily basis.

I know also what you mean by the $500 per month.  My dad was a veteran and he received $900 per month...he had heart disease and his medication alone was $1,200 per month.  

My mom was retired from our local hospital...a secretary....she received $400 per month.  That left them $100 per month to live....thank goodnes my dad was a wheeler dealer and made money elsewhere, or they would have starved without help.

They were in their mid seventies when they died and had worked their whole lives.

Lots of love & hugs
doni
Helpful - 0
335728 tn?1331414412
I have been struggling with the fact that I have been granted my disability pension (at 46 years old) and the fact that I feel like I can't tell anyone for fear of them "reporting" me because I look fine to them!

I have been feeling guilty on some days (the good ones) that I am getting this "wonderful pension" but then I wonder about the other people that are not as fortunate as I am to have a hubby that makes a pretty good living.  Just how the heck are these people that are not as fortunate as I am to live on $500 A MONTH???

Here in our city we have a large problem of homeless people and many people believe that these "homeless people" are all alcoholic, drug addicted, wife beaters that got what they deserve.  We have HEARD these things from members of the public on the nightly news!  However, I have gotten a good slap in the face with a good dose of reality and I KNOW that some of these "homeless people" are suffering from chronic illness and how can live they live off of $500 A MONTH???

These people roam the streets aimlessly but they appear to be fine and healthy and "fit to work"...I KNOW the difference.  On a good day, I appear fine and healthy and "fit to work" BUT, I KNOW that I wouldn't last 15 minutes trying to work at anything!  I have to take breaks when I am getting dressed, brushing my teeth, putting on makeup for cryin' out loud!  

I have a whole new outlook on people as a whole.  We cannot take it for granted that if one person can do something that the next person can do the same thing because they look just as healthy as the first person.  I know that my guilt will continue...until I see that strange little neon white tadpole swimming out of my left eye or everything appears wavy out of my left eye or my left arm becomes completely numb and the pain in my legs won't let me stand up.  I also know that I have a new outlook on all humans in our society...of course there are those that have addictions and do horrible things to others and themselves that warrant their lot in life but I will never put them all in the same basket again...they like us deserve to be looked upon with respect and without passing judgement...they are just as apt to have a chronic disease as we are and they have the right to demand respect in the same way we do.  

I can only hope that "National Invisible Chronic Illness Awareness Week" acknowledges those that have fallen through the cracks.as well...regardless of whether we are homeless or not...we all need to be seen.
Helpful - 0
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