Coming to terms with all of the changes I’ve experienced in the last five years has been anything but easy. Not only is coping a difficult task, but learning to ignore the stares or comments people make has proven to be worse than my pain at times.
I am not the same person I was before being diagnosed. Not just mentally and emotionally, but physically as well.
Growing up I was known as “Flakita” which is the Spanish term for skinny girl. Rheumatoid arthritis has changed that for me. I was on prednisone for nearly 2 years and one of the side effects is weight gain. No matter what I did, I was never able to shed the extra pounds. No amount of dieting helped and exercise was too painful to attempt.
I also went from having long and healthy hair to losing it all because of chemotherapy. That is still something I’m getting used to. I remember crying every night after my friend cut my hair for me because I felt so ugly. I didn’t know who the person staring back at me in the mirror was anymore.
I break out in rashes every summer due to lupus and the medications. I’ve tried not to do too much to prevent the outbreaks. All I can do is cover up from head to toe and stay out of the sun, but if you live in California you know the heat makes that unbearable.
I am judged on a regular basis by strangers and people I know. Although I’ve lost some of the weight I gained now that I’m off of prednisone, I still have more to go. Not many people know the reason behind my weight fluctuation, they simply assume I’ve let myself go.
I’ve had friends and family members call me several different names since I lost my hair and I pretend to laugh so they think it doesn’t bother me. Some do it jokingly and others maliciously, but the end result is the same. I feel more self-conscious than ever.
I’m reminded of the saying, “If you don’t have anything nice to say, don’t say anything at all.”
I wish others would follow that. Instead of focusing on my appearance or how much it’s changed, I want others to realize I’ve also changed on the inside.
I’ve worked so hard to try and remain strong through everything, to have a positive outlook on life and never give up. There are just some people in this world who feed off of others’ misfortune.
As if it’s not bad enough that I’m sick and constantly in pain, now I have to deal with shallow and cold hearted people?
Words can cut a lot deeper and cause more harm than any of the diseases I have combined. If only those people could walk a mile in my shoes, if only they felt what I feel. But I can’t change the way others treat me. I can only change how I let it affect me.
From here on out — those people have no control over my happiness. I may not be able to control my weight, hair loss or other aspects of my diseases but I can control how I see myself.
Now when I look in the mirror I see a strong woman who has been through more than most people go through in a lifetime and still manages to keep a smile on her face. I see beauty in my pain.
Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.