I have sarcoidosis and am a Patient Advocate.
In the Fall of 2020, I was diagnosed with neurosarcoidosis. The biggest question I struggled with after my diagnosis was, “What do I do now?”. My life was completely upended. I struggled with new treatments consisting of steroids and other immunosuppressants, changes in my appearance, including weight gain and hair loss, seemingly unending fatigue, and isolation from family and friends. I could go on and on about the struggles over the last year and a half, but I want to skip to the good part – how I discovered value, gratitude and ways to give back.
When I was first diagnosed, I did what I think a lot of us do when something bad happens – I went to the internet. We search for answers as to why we have this disease, what the treatment options are (in addition to what our doctors say), and anything else that might make us feel better. It was during these late-night searches I came across the Foundation for Sarcoidosis Research (FSR) and the Patient Navigator Program. I reached out and was matched with a wonderful woman who helped me traverse my first doctors’ visits and gave some options for adjusting how I do things. At the time, though my symptoms were improving, I was still very fatigued. Whether or not I would be able to continue to work and enjoy life was very much on my mind. My Patient Navigator helped me see that even with this disease, I could still find ways to be productive through modifications and time. Now, I always remind myself to have, “patience, grasshopper.”
I began attending SarcSocials and other support groups. It was in one of those groups early on that I met another person with neurosarcoidosis. During a breakout session, she invited me to call her. We spoke about how weird some of the symptoms were and she helped me understand that they weren’t really so weird (my skin feels like it has menthol on it all the time). We talked about medication regimens and side effects. It was so nice to not be alone and talk to someone else who cared. It wasn’t until months later that I discovered she was also a highly active volunteer with FSR.
These acts of kindness helped me through the next several months and prompted me to get more involved with FSR as well. I care about the people, family and friends impacted by sarcoidosis and looked for ways I could help them with this journey. This is an often misunderstood and lonely disease, but there is power in numbers.
FSR’s website has a Take Action section where I went to explore volunteer opportunities. An application and phone call with Mindy Buchanan, FSR Director of Patient Programs, led to me becoming a Patient Advocate and hosting my first SarcSocial – the Healing Power of Food. It was fun to be able to share something I love and interact with other people!
Volunteering with FSR is important to me and something that gives to me as much as I give to it. Being a Patient Advocate has helped me feel more comfortable telling my own Sarc journey. I do not feel as different or alone as I did in the beginning. Sarcoidosis is often called the snowflake disease, because no two cases are alike. Even though we are snowflakes, we all share common themes in our journey. Every contact I have with someone helps me think about their different perspectives and rethink my own as well.
Volunteering has helped me feel more confident in my disease management and self-care. I am not as intimidated by the doctors, and I ask more questions and make sure I understand my options. Last month, I started restorative yoga online. I do not love it (yet!) as much I loved yoga flow in a live studio, but I’m not sure I could physically do that right now, so this is a great first step to gaining back some physical activity I lost. I am learning to be appreciative and focus on what I can do versus what I can’t do.
I want to say, “Thank you FSR and the FSR Community!” While things in my life are not perfect right now, they are a little better knowing that you are there and I’m grateful to be able to volunteer and hopefully make a difference in someone else’s life. I am honored to be on this journey and look forward to the next time we are together.
Robin, FSR Patient Advocate
For more information on the Patient Navigator program click here: https://www.stopsarcoidosis.org/patient-navigator-program/
For more information on becoming a Patient Advocate click here: https://www.stopsarcoidosis.org/advocacy-program/