Wednesday, March 14, 2012

Chronic pain devoured my self esteem

In my last post, I discussed overcoming the shame that has accompanied my arthritis. Today, I want to talk about how chronic pain affected my self image.

I don't know if there truly is a body type that reflects an unhealthy immune system. However, I have always felt unhealthy, and I do think my body reflects that. After being born premature, I was a colicky and fussy infant. By 5 years old,  I had developed asthma that sticks with me to this day. Rarely has a winter passed that I have not gotten sick, as I seem to be far more prone to illness than anyone else I know. Now, at 22, I am facing swift, aggressive R.A.

As an unhealthy child and teen, I never felt that my body was "right." It has never seemed to function correctly, it never looked right, and everything about it felt saturated in wrongness. Leaving the high school environment definitely pulled me away from the incredibly unhealthy infatuation with body image of which most high school girls are guilty. As a college student, I have made some impressive strides in accepting myself, and working to change the things I felt were changeable.

Arthritis has ruined this progress for me. Even after overcoming my shame in my disease itself, I still face my body daily and usually hate what I see. Talk about wrongness! My joints are swollen no matter what, and there's very little I can do about it.

My magnificent cankle
 While my toes are still pretty cute, my right ankle is a massive mess. Most of the time, I have some bruising, a TON of swelling, and a very limited range of motion. My left ankle, surprisingly enough, is doing okay, but my socks don't fit my weird right cankle. My extra cool Converse have to go unlaced in order to provide that fantastic cankle with extra room to breathe.

Notice my amazing blue robot pants (thanks BF)

My knees are another constant problem. They're pretty much like softballs. There's no definition left in them at all. I have a super cute purple skirt that I find myself hoping to wear every spring, but not when I have weird arthritis knees!

I don't have a lot of swelling in my hands and fingers, but I do exhibit rheumatoid nodules in my thumbs. My fingers and knuckles have some low-grade swelling most of the time.

These are the things that not only prohibit me from doing the things that I love, like drawing, going for walks, and visiting my pony, but they also keep me from feeling good about myself. As my arthritis progresses, I have also begun to lose my hair. My hair has always been my very best feature - everyone says so! Now, I lose about a handful every day. It collects on my laundry, gets stuck in the vacuum, and just seems to be everywhere but on my head. Some of what's lost has begun to grow back, but my hair isn't pretty like it used to be.

Losing my hair, watching my body stop working the way it's intended...these are struggles that I haven't quite overcome. I feel broken and yes, even ugly. My joints don't work right. Everything about me feels wrong. Sometimes I don't want go to on my walk until later in the evening, when nobody can look at me and watch my body let me down.

Sometimes, even as an adult, I forget that looks aren't everything. Yes, my body looks strange right now. Of course it does! It's undergoing an assault by its own forces, every day of the week! I never remember this when I need to, but my body is telling me something very important. Without my inflammation, I might not have caught my R.A. at an early stage. As the swelling starts to leave certain joints, I begin to have faith that my Humira is working. Inflammation is a crucial part of many autoimmune diseases. It's the physical gauge by which we can measure pain, and it will tell us when our bodies begin to respond to treatment.

Those of us who suffer from chronic pain have to forgive our bodies when they look a little weird. They're telling us something that could be key to our recoveries, and its up to us to peer past the strange lumps and bumps and take note of what our bodies are actually saying. When my knees get even more giant, I know I'm going to have a rough day. When my wrist swells up, I know to take it easy. And when, at long last, my elbows, shoulders and hips lose their swollen, lumpy appearance, I know that my stubborn arthritis is beginning to bend under the pressure that Humira and methotrexate are applying.

Plus, who needs to be extra super pretty and free of lumps and bumps when you're as awesome as I am? Who says being beautiful necessitates being free of inflammation?


  1. I stumbled upon your blog on my blog. Funny how the amazing inter webs connects RA people. I appreciated reading your well written struggles with a horrible disease. I'm in my early 30's and went through (and continue to go through) what you are going through with RA. I wish you the best with life and school.

    1. Thank you so much for this lovely comment! I love how the internet has connected me to this huge network of chronic pain patients. I feel like we're all a very tight-knit community because we share so many similar experiences. I wish you the very best with your life and your R.A.! (Please tell me it gets better)

  2. Oh shoosh. You're barootiful. Always. And, as you said, AWESOME in every way. My hair falls out too. A lot actually. I can tell how much I've lost every time I run my hands through it or go to pull it back. sucks Dx

  3. I too am new to RA. I was diagnosed about 15 months ago and am still struggling to find the right med! My hair is not falling out but I am struggling with self esteem also as in addition to the swollen cankles, feet, and wrists I have now been on a good dose of prednisone for the whole time and have developed moon face, and it is hard to look in the mirror and be proud! I understand your struggles and hope that things get better for you! Your post is heart felt and I am glad you shared!

    1. RA is such a waiting game! I hope you're able to find relief and the perfect treatment very soon! We have to keep remembering not to let our disease dictate who we are or how we feel about ourselves. Thanks so much for visiting and stay strong!