When I was first diagnosed with pemphigus vulgaris (PV), I didn’t have the slightest clue what those strange words meant or how this disease would impact my life. The physician who finally diagnosed me handed me a description of the disease and referred me to another doctor, an expert in PV management.
In the meantime, I waited nearly three months to see a specialist, armed with only a vague report on the medically and statistically significant features of PV. I felt alone and confused, feelings only amplified by descriptions that didn’t relate to me at all—I wasn’t even half the age of the individuals typically affected! I had so many questions. What if they got the diagnosis wrong? What could I eat to help heal the sores? What could I do besides take a handful of pills every day?
It was during one of my many internet searches that I came across the IPPF. I couldn’t believe that there was an entire organization dedicated to patient information, and I immediately took advantage of connecting with a peer health coach (PHC). My PHC for the first person to actually tell me, “It’s okay to be scared, everything is going to be okay.” I will never forget those words. They were the reassurance I had been missing and desperately needed. From there I began to realize that I wasn’t alone, that I didn’t need to figure everything out on my own. There were other people who had been through similar experiences to help guide me through this journey.
As I engaged more within the IPPF community, I realized how important and therapeutic it was to share my personal experiences living with PV. Prior to attending Rare Disease Day with the IPPF, I had never told anyone except my close family that I had an autoimmune disease. I hid it away like a dirty secret because I was afraid of appearing weak or being treated differently. Especially as a student of medicine—we are supposed to treat patients, not be them.
When I finally met the members of the IPPF in person—the individuals whose stories I’d read and advice had given me confidence—I decided that I was done denying that part of myself. I am a doctor and a patient. Having PV has made me the person I am today. Rather than being a weakness, it has given me the strength to be wiser and more empathetic. I will use what I’ve learned to teach others, share what I can in both the patient and the medical communities, continue to raise awareness of PV, and elicit change in how people view medical conditions.