Recently on Twitter, I requested submissions for personal stories about the harms of inadequate, oversimplified or incorrect public and institutional awareness of disease. I've discussed many awareness campaigns in this blog. My goals are to inspire critical thinking about this behaviour and motivate true awareness.
I am honoured to share with you this guest post by Tia Maria about her experience with rheumatoid arthritis. Tia explains how misconceptions about RA stigmatize her disease and reduce her access to support and care. Thank you for submitting this and raising awareness about RA, Tia!
My name is Tia and I have rheumatoid arthritis (RA).
What might surprise you is that I’m just 31 years old. I am overweight, but not to an extreme. I eat a rounded diet with healthy habits. I like my fruits and vegetables. I used to smoke but quit over four years ago, long before I got sick. I have maybe two alcoholic beverages a month. I’ve never done recreational drugs, never taken a pill that wasn’t prescribed to me. In fact, I used to have a huge hang-up about swallowing pills and had to nearly gag myself just to take vitamins.
If you’ve heard about RA, you probably have some of the same misconceptions I had before I was diagnosed nearly two years ago. I thought RA was something that happened when you got old. Sure, we might all have joint pain now and then, but arthritis is for our grandparents. I had a vague mental image of my great-grandmother’s gnarled hands. That was RA.
Or maybe you’ve seen some of those commercials for medications for RA. You see the mom braiding her daughter’s hair, the man riding his bike, the woman digging in her garden. You might think that RA isn’t very serious then, right? Or if it is, at least there are medications out there that will make it all but disappear, right?
The truth is all of that and none of that. Yes, my great-grandmother’s gnarled hands were the result of rheumatoid arthritis. They were the result of her having lived with the disease for nearly 40 years. Yes, there are medications to help fight the disease. In some cases, patients can resume some of the activities they love.
My experience is this:
I was diagnosed two years ago after spending all night in the Emergency Room in unbelievable pain. The pain had come on suddenly and was unlike anything I had ever experienced before. I was coming off a nasty gastrointestinal infection but the doctor that night couldn’t find a reason for my symptoms. He sent me home after eight hours, telling me it was “all in my head” and I should “follow up with a mental health professional.” It was my primary care doctor who listened to me, did a few lab tests, and gave me the diagnosis. He referred me to a rheumatologist and started me on a corticosteroid, something I had never had to take before in my life.
When I saw the rheumatologist, she informed me that I was the worst case she had seen in some time. I stared in shock, I had seen the people hunched over canes in her waiting room. I listened numbly as she talked about starting me on something called a TNF-blocker. She breezily informed me that the information that came with my prescription would warn me of cancer, but that I shouldn’t be concerned. My fiancée and I listened intently as she described the process of self-injection each month.
It took me nearly six months and a bout with Walking Pneumonia to fully understand the impact RA would have on my life. In fact, I learned that RA could shorten my life by an average of ten years. I learned about how RA can impact my heart and lungs. I learned that using TNF-blockers to control the disease increases the risk of infections, some which can be especially dangerous, like tuberculosis. It also puts me at a higher risk for cancer than that of a person without RA. However, living life without TNF-inhibiting treatment is not an option, at least for me. Without the injections, the pain and swelling in my joints becomes so extreme that I am unable to walk. My hands turn into useless claws and tasks like getting out of bed, dressing myself, and showering become impossible without help from others.
Having RA also opens me up to further autoimmune disorders like fibromyalgia, lupus, and multiple sclerosis. In fact, I developed interstitial cystitis, another disease without a cure, and my doctors say it’s because of my compromised immune system.
None of this is shown in those nice commercials for the medications. They want you to try their medicine, so they let you believe you will once again be able to braid hair (I haven’t been able to braid my hair in nearly a year.) and garden. The problem with these commercials is they are the only sort of media regarding RA. My family and friends see them and think I should be miraculously cured. “The man on TV is riding his bike, Tia, surely you can go for a walk.” Because my disease is inaccurately portrayed, those close to me don’t fully understand the impact it is having on my life. I don’t live near my family, so they don’t see the days where I can’t get out of bed. They don’t see the clumps of hair that are falling out or the skin rashes. They do see me walking with my cane but they can’t understand why. Because of the misconceptions and lack of information out there, they think that if I simply lost weight or exercised more, I’d be cured.
It’s not just my family, either. RA falls into a category with a lot of gray area. I have to fill out mountains of paperwork to prove that RA has impacted enough areas of my life to qualify for Social Security Disability. I often wonder aloud why they can’t just send someone to my home to see me. If they could see the swollen knuckles of my hands, the swollen feet that are red and hot, they wouldn’t be so quick to judge me able-bodied. I had one agent at Department of Human Services tell me that if I could sit and call her, I could obviously handle an office job and I wouldn’t need government assistance.
If there were more awareness, more accurate depictions of the disease, I think some of the misconceptions could be laid to rest. Certainly you don’t tell someone battling cancer that they should “just suck it up and get a job” because through awareness campaigns, we know how serious and life threatening cancer is. While the symptoms can differ, RA and other autoimmune disorders are just as important as cancer, AIDS, and heart disease. The lack of awareness and understanding is leading to discrimination and mistreatment. Maybe if RA got a spotlight, money could be raised for research and better medications could be developed.
Maybe even a cure could be found.