I remember vividly the first time that I felt that type of pain. I was 14 years old and had just finished a rigorous, chilly Saturday morning track practice. Coach told us that after we completed one last mile, we could leave. I finished the mile, but all I could do was stand in place. There was a throbbing in my knees, and no matter how hard I tried to pep talk myself, I just couldn’t move. It was like I was tethered to the ground.
When I was 16 years old, I was diagnosed with Rheumatoid Arthritis. After multiple years of dealing with intermittent pain amongst days with no pain at all, I was relieved to have a diagnosis. I didn’t yet understand what that meant for my life.
Rheumatoid Arthritis is an autoimmune and inflammatory disease, which causes your immune system to attack healthy cells in your body causing inflammation in your joints. This inflammation causes long-term damage to your body, joints in particular, and can result in tissue damage to your heart, lungs, and eyes.
There are days when I can hike for 12 miles along the Rio Grande, and other days when brushing my hair feels like an overwhelming challenge. If I’ve typed too much the day prior or a thunderstorm is looming, then the pain is expected, but it’s unpredictable too. It can be triggered by stress, overuse, underuse, heat, cold, rain, snow, certain foods, and the list continues.
I’ve hesitated to share this with many people for fear of their reaction. Upon telling friends that I had Rheumatoid Arthritis in high school and college, I was often met with the response, “my grandfather has arthritis.” While this is well-intentioned, it is another reminder that I shouldn’t have it. That when you’re 16 or 30 or 43, you shouldn’t be suffering the pain brought on by Rheumatoid Arthritis. At the same time, I don’t need, nor do I want, pity and constant concern. It can be just as exhausting discussing how I feel as feeling that way itself.
Since I was very young, I have viewed myself as independent and strong, but there are so many days that I feel helpless, and with this helplessness comes shame. I don’t share this part of my life with many people because I don’t want anyone to define me by these moments.
I run a nonprofit effort where we organize and support communities with 12-hour design and development marathons benefitting nonprofit organizations in those communities. This requires that I’m on my computer for most of my work day. After doing this full time for three years, I’ve learned of the physical burden that often has. The repetitive nature of sending emails, writing content, and using design tools causes such inflammation in my hands and wrists that I’m unable to use them for hours or even days.
The idea of opening up about this disease has been something on my mind for the last year, but with the more recent conversations around COVID-19 and immunocompromised individuals, I felt called to add my perspective to the dialogue. Each day I take medication that suppresses my overactive immune system so I’m able to get out of bed and function at a normal level. A few weeks ago I was able to stock up on my medication for the next three months. However, one of the medications was already in short supply, requiring me to cross my fingers and hope that they restock before I run out. Until this past week, we were all still hugging and shaking hands, which required a vigorous scrub. Now my husband and I are self-quarantining at home. We’ve been working remotely for the past three years, spent over a year living and traveling in our RV, and are secret introverts so social distancing is something we’ve been training for for years. However, knowing that I can’t leave because of the potential repercussions to my body is what truly feels limiting. It adds to the existing frustration that I have with my body and that mind over matter is not always possible.
I resent when people don’t acknowledge or consider that people other than infants and the elderly are also at risk of disease when exposed, but that is entirely unfair. If I’m not willing to share my own experiences, why should I expect that people inherently understand those experiences and apply that to other interactions that they have? There are many people suffering from a variety of issues that cause them to be immunosuppressed, and the world is acknowledging those people now because we’re willing to step up and share. As we feel comfortable to share this part of ourselves, we should.
After reading this post to this point, I started asking myself “am I whining?” and “how can I end this on a hopeful note?” but that wouldn’t be authentic to how I am feeling right now and being authentic is the whole point. There are many days that I’m feeling healthy, joyful, and strong, but there are days that I’m not and that is ok. The truth is that I’m a hopeful person at my core, and I believe that writing with honesty and conviction right now is what will help others who may be feeling the same way, or provide a little insight to those who may not understand, but want to.
Alright, time to rest my hands and take a nap.