Medicine & Research

Recently, I participated in a research study conducted by the University of Illinois Chicago. It wasn't my first study, but it was the first time I looked forward to sharing the quirky things my body may or may not go through as I complete my ninth year of living with MS. I used to feel down about how many boxes I now check off compared to my 18-, 20-, or 30-year-old pre-diagnosed self. But not today. Today, the questions felt tailored towards "me" and others like me. 

These questions reminded me even if I am older and some things are different, I have so much to be grateful for because my "No" and "N/A" responses still outweighed my affirmatives. They didn't make me feel like a failure or that something was wrong if I had to check severe fatigue or acknowledge that my body is especially challenged during the winter months.

Today, I laid on a table, walked a line, repeated muscular commands - and I smiled because I got to contribute to the greater good. My participation was going to help someone. This was absolutely a full-circle moment for me. But how did I choose my trial? What made me comfortable? What were my deal breakers? I'm so glad you asked. 

First, I refused to stop taking medicine that worked for me. If you're comfortable, (along with your physician or healthcare provider) taking a sabbatical from your medications - especially DMTs - then maybe those clinical trials could work for you. Personally, I prefer academic research than studies solely promoting companies who may not look to benefit the general population.

But don't get me wrong: I've participated in studies with a more targeted focus and narrow pipeline, but as a researcher to my core, I like aiding universities and colleges in understanding my disease within the context of people who fit my demographic. That's where I feel I can have the most effect. 

If the intake process includes additional steps, I find studies that fit my current lifestyle or challenge me to add something worthwhile to it. For instance, the study I'm currently in monitors my activity levels throughout the day. Tell me you're counting my calories without telling me you're counting my calories, UIC. But seriously, the winter months are a huge hurdle for me. My activity levels tend to drop because of the lack of sunlight, so this (not-so-subtle) nudge to stay active is quite helpful.

 Lastly, could I see myself collaborating with this organization again? If the answer is "no," that's a red flag and I won't participate. The value of any research lies in its participants, and I don't want to feel like another number. Dr. Zheng was kind and curteous. She was clear about her study's objectives, and she made me feel valued. I look forward to seeing the results of their research and would gladly participate again if asked.

Financial compensation is the cherry on top for any study (for me, anyway.) Let's be honest: we can't get our time back, but we can get paid for it. I'll admit that I've done a few studies without financial incentives, and that's okay, too. I know people who look like me don't always run to sign up for research. If my participation encourages others to join down the road, then it's worth it. 

In the end, contributing to research not only feels empowering, but also reminds me of how far I've come. Every step I take - literally and figuratively - helps move the needle forward for others like me. And that's something to celebrate.