by Ashley Bush
Today is Rheumatoid Awareness Day. A day that my family and I were not even aware existed until this past fall, for a disease that my mother battled for 26 years as we fought beside her. This photo is of me holding my mom’s hand in one of her last hospital visits of many. I took it for myself and never thought I would share it, but today I feel I want to. This disease, and frankly all autoimmune diseases, are devastating to millions with such little understanding and awareness, even in the adjacent medical fields. No mass marketing campaign with pink ribbons. No online challenges. Just as many people suffering and a fraction of the information.
When my mother began getting sick, I was 9 years old. I was witness as some days she would wake up not able to move and as a busy mother she would drag herself across the floor to a hot bath, that she asked for me to run in order to ease her stiffness and have a chance at moving that day. And sometimes once she got going it was like she was as healthy as anyone else. There were not outward signs of her inward struggle and the symptoms came and went without any warning. She took heavy medications that she was told were really the only options but would harm her bones and organs in the long term, to which she replied “I have games to watch, shows to see, kids to raise -- I'll worry about that later when it comes. Give me whatever I need to take.”
The crippling of her hands came quickly after her diagnosis and was the first outward sign to show. I remember feeling embarrassed about them. I don’t think I was embarrassed of her, but I was embarrassed for her when I saw people stare at her hands or shake them and feel how fragile they were. I could see them wondering what was wrong with her but not knowing how to ask. As a child it broke my heart. As an adult it made me angry. It was quickly that the strength left her hands and wrists. She was unable to open jars, or carry anything of weight – but despite those limitations that only increased over the years, these hands were strong. The strongest ones that have and likely will ever touch me. These are the hands that held me through my first heartbreak, and every one that followed. They pushed me to be my best. They scolded me when I was wrong. They wiped my tears away. They clapped the loudest at every performance. They cooked all the meals that were hot on the table when I lived at home and fed my soul when I came back to visit. They waved wildly to greet me when I walked in the door. They held my hair when I was sick. In later years sent me daily texts of encouragement and even wrote long-winded posts on Facebook for her friends to enjoy. They held onto my own hand through so many moments, giving me the courage I couldn’t find in myself. They did all that while facing immense pain day in and day out. And in the last moments this tiny, mangled hand grabbed my hand in hers, looked into my tear filled eyes and told me without weakness in voice that it was time for her to go and not to cry because she would always be with me and she knew I was strong enough now to do it without her.
This disease has shaped who I am. Through the years and countless complications and hospital visits it became a master education for me of our very flawed medical and insurance systems. It taught me the overwhelming importance of being your own advocate. The Rheumatoid Patient Foundation is an organization that is working to have the name of this disease changed from Rheumatoid Arthritis to Rheumatoid Disease. It is my experience that not only the public is unaware of the large numbers devastated by autoimmune diseases (RA being at the top), but that patients, specifically of RA, and medical professionals have a lack of understanding that can be related back to lack of funding due to the downplaying the word "arthritis" brings to this cause. I believe this is the first in a very important step as the word "arthritis" is a misconception of the disease. It does damage the joints, but it is a disease that attacks the body, affecting the tissues and other major systems as well. A large percentage of people are diagnosed in their late 30s and early 40s. In the last 2 weeks alone, I have heard “rheumatoid arthritis” used as a punchline in two TV shows, emphasizing why a very old person can’t move as quickly. That would be osteoarthritis, or commonly called just arthritis - which is the wearing down of joints over time. Rheumatoid Disease is an autoimmune condition where the body is attacking its own tissues including the joints and internal organs, and over time also leads to bone erosion and deformity. It affects people of all ages, including children. You see the commercials for medications on TV and you likely know someone that might be struggling with flare-ups in silence. So today, the first year that I am aware of a day dedicated to this rotten disease, I decided to share my mom’s hands affected by RA and share a little bit of info and a small window into an epic battle with the disease. Thanks for reading my contribution to awareness. It’s my sincere hope that even one person diagnosed or a family member with a loved one diagnosed will have an easier journey because we share our stories and make more knowledge and understanding possible.