Whenever I hear the words “arthritis research,” I picture doctors in lab coats and goggles, mixing solutions in fancy machines. I picture the process of inventing a new medicine and patients taking part in risky clinical trials of experimental drugs. I don’t immediately envision that I can impact research, however, I would come to see things differently.
A couple years ago, I happened upon a Twitter user who talked about her experience with arthritis. I followed her hashtags, which led me to dozens of individuals with arthritis or other chronic illnesses. My mind was blown; I had never known this community existed. It was weeks later that I saw my first opportunity for research.
I can’t tell you exactly what this research was for. It was a simple survey, I know that much. I sent an email that said I was interested and took about 25 minutes of my day to answer varying questions about myself, my illness and my pain.
Just like that, I had participated in research. I had helped, in some small way, to find a cure, or better treatment, or simply to help others understand. No poking or prodding, no white lab coats, no experimental treatments, just a few simple questions.
As the months passed, I took part in more research. There were more surveys, a few phone calls, some emails, but still nothing that took more than a few minutes of my day.
My part in this research didn’t take much effort. I had no direct benefit from this participation and I didn’t think I would gain anything from my experience. I was wrong.
The spark inside of me, the one that gently aches to be fed knowledge, had been fueled. With every survey, phone call, or email, that spark grew in to a raging fire. I began doing my own research, reading about these topics and many more. I learned more about my disease than I had ever known before.
I was reminded that arthritis, and arthritis treatments, are not one size fits all. Because a medicine works for me, does not mean it will work well for someone else. Because a task is easy for me, does not mean it will be easy for someone else. Because I can live a relatively comfortable life with current available treatments, does not mean someone else is not waiting for a new treatment to save their life.
Most importantly though, I learned that I cannot do this alone. I cannot navigate my illness, my treatments, even my emotions by myself. I cannot expect changes to happen without doing what I can to help. I need help from doctors, from researchers and from the community as a whole.
I also learned that it is vital that we all come together to impact research, because together, we can cure arthritis!