Reflections III

I’ve managed to make it through my entire twenty four year life span without watching What’s Eating Gilbert Grape.  Which is odd. What with my obsession with all things Johnny Depp related. I finally watched it a few days ago

Of course I loved  it.

Do you remember the scene where Gilbert wants to introduce his girlfriend to his mom. Her immediate reaction was a slightly panicked no.

She finally agrees. They are introduced and the first thing she muttered was a pitiful ” I haven’t always been like this”

It immediately brought me to tears. Because I think the same exact thing every time I meet someone new.  The first thing I always want to say is,

“It’s not my fault I’m like this”  or

“I’m only overweight because of the steroids.” or

“This isn’t me. I’m not the person I look like. I’m a different person behind the weight and the twisted and deformed joints. ”

I don’t know why but the thought of people seeing me like this is terrifying. 

It used to be easier before the R.A. made such an obvious outwardly physical appearance.

When I first got sick, I hated telling anyone. I just stopped returning the phone calls from a guy I was dating at the time. I never told any of my professors. I let my Algebra professor think I was lazy and unprepared instead of explaining that I missed class because I was in so much pain that I couldn’t drive to class.

At work when I started having to wear braces on my wrists, I told everyone it was because I was so clumsy. I was limping because I twisted my ankle.

What is it that makes it so difficult to show weakness?

And how come after everything I’ve been through I still give a crap what complete strangers think about me? I never did before.

I’ve always been very independent. I’ve always been different from people I knew. I definitely marched to my own drums. If everyone was doing one thing , I immediately felt the need to do something else. I never felt the desire to get drunk or high or sleep around when I was in school like most people. I worked in a bar, but hated the feeling of being drunk.

I always made friends with the quiet, shy, people who didn’t have anyone. I was always walking around with a novel stuck in my face even though it was “lame”

I hated people who thought they were better. I abhor social hierarchy. I abhor unnecessary and extravagant material possessions. Instead of spending three hundred dollars on a class ring I donated the money to the ASPCA. I couldn’t make myself care less if someone snubbed their nose at me.

What is it about my own physical weaknesses that is so humiliating to me? I feel like it turned me into something I hate to be. Not the sickness. But my reaction to it.

Sometimes I feel so ashamed about how I’ve gone against all my beliefs.

I’ve always considered myself a strong person.  I have been through alot worse in my life than physical weakness. But I’ve always handled it well. I’ve always been able to be proud of myself. But the longer I’ve dealt with this illness, the harder it is to stay positive.

As much as I hate to admit it, one of the hardest parts of this entire journey with R.A. is how people perceive me now.  I hate that that is how I feel. But it is.  It’s something I struggle with but no matter what I tell myself, or what other people tell me, it’s something I cant get past.

But I really really want to.


9 Responses

  1. I’m really sorry you feel the way you do. I don’t know whether my method will work for you or not, but it helped me. After I reached 50, I began to experience that feeling of being discounted, of no interest or importance, or even of disdain because I was an “old lady”. I decided to do things to visually challenge the sterotypes by wearing my hair in pigtails or dying it bright red or wearing exotic clothes. It really helps. Why not give those people you worry about something else to pay attention to, something that might intrigue them, like dying your hair neon red?

    • djcnor,
      You sound like a very very cool lady! I’ve dyed my hair bright red in the past. I was just thinking that Im ready for it again:)
      I think I’ll take your advice!!!! Thanks!

  2. Oh yeah, I know this feeling.

  3. I just finished reading a book about the way we talk to ourselves and how we should change our inner voice.

    I am the opposite of you, my RA doesn’t show, I look completely normal but eat babyfood for dinner because I can’t chew.

    The things that go through my mind are “I’m useless”, “I’m always going to be in pain” and so much more. The book went on to say we are what we tell ourselves we are.

    I’m not useless, there are a lot of things I can do, maybe some of them aren’t the things I want to do but I’m still useful. As for pain, we’ll right now I have it…maybe tomorow or in a month I won’t. In the end all we have is today.

    From the things you wrote in this post about who you are, you sound like a pretty awesome person…keep reminding yourself who you are…

    • Melissa,
      Thank you! I’ve also read similar books. I know the importance of keeping a good attitude. I’m always aware when I start having low thoughts, that they arent helpful at all 🙂 Sometimes I just find it very hard to push them away.
      Generally, I’ve always considered myself very positive. Its just been beating me down lately. I keep looking for a silver lining.
      Thank you for the comment. Comments like yours brighten my day. To know that someone else out there understands is amazing.

  4. I just want to say thank you for sharing these feelings. I have had RA since I was 16 years old (I just turned 30 a month ago) and I have often felt this way. I also find that I feel like no one else in my life understands how it feels to feel weak and ashamed of something that I can’t even control. I know that it doesn’t make sense to feel that way, but I still do. And it is so hard to feel beautiful when your fingers and knees are oddly shaped and you can’t manage your weight because you are too tried or in too much pain to exercise. I completely understand those feelings and hope you can find a path to the strength inside that can help you pull through. There is hope for better days. I have seen both and believe that there are ways to live our lives fully with this disease. I hope you keep sharing your feelings with us, I think that is the first step on that path.

    • incandescentflower,
      Its hard to expalin sometimes, isnt it? I always feel like I shouldnt be feeling a certain way. I know it’s silly. And I know there is no certain way one should feel. Thank you for sharing too 🙂

  5. I’ve seen that scene too. I have only been diagnosed since summer. I started to think some of the same thoughts that you mention here. I don’t think people see the R.A. – I’m a lot heavier than I used to be when I could work out three hours a day and bench 155…but other than walking slower, taking stairs very carefully, and wearing magnetic copper bracelets (which I joke are my Wonder Woman bullet-deflecting bands) it isn’t obvious that anything is wrong. I keep thinking that if I remain in denial than maybe it will go away like some monster I imagined in my dark bedroom as a six year old.

    • warrior2ra
      I understand the feeling. I find myself missing physical exertion too. Dosnt running as fast as you can sound wonderful? I wish I had Wonder Woman bracelets! Haha, they sound cool. Do you find that the copper really works? Ive never tried them….

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