Around the same time, I shared a video of myself with Bell’s palsy on social media. Having facial paralysis made eating difficult and suddenly I found myself chewing differently to compensate. I could no longer blink my one eye, which made it dry and painful. At night, I had to tape it shut to sleep. It felt scary and vulnerable to share this information with others, but I strive to be open about my life. Even though I felt a strong impulse to hide how I looked and retreat into the shadows, I didn’t. While hearing words of support and learning more about Bell’s palsy helped me as I coped, I also hoped that by sharing I would help normalize Bell’s palsy and other facial differences. And, it helped me feel less alone when I heard from so many people who experienced Bell’s palsy, Lyme disease or autoimmune conditions. So often, women in particular have invisible illnesses and they’re struggling without others having any awareness of their experiences. I hoped that by sharing what I was going through, it might help some people feel less alone.
By Saturday, my ear had become so swollen that I visited the emergency room. The doctor confirmed that I had shingles in my ear. They weren’t visible when I had gone to urgent care. Taking all my symptoms into account, including a negative Lyme disease test, my doctor determined I indeed had Ramsay Hunt syndrome. This diagnosis sounded wild — like so many others, I had only ever heard about it when Justin Bieber said he had it.
While I am grateful I received a diagnosis, it is still disappointing. I wonder why I developed such a rare disorder, and how I got shingles. Traditionally, shingles impacts older people, but my doctor now suspects that when I had COVID-19 in June, it knocked out my immune system, making me more susceptible to shingles and now Ramsay Hunt.
Ramsay Hunt is so rare that it’s been tough to find a doctor or a clinic who will treat me. Luckily, I do have an appointment with a doctor to figure out what the next steps might be. I am worried about contracting COVID-19 again because I don’t want any other negative health side effects to occur from the virus.
While I’m grateful my face now looks like it did before the paralysis, I’m still dealing with the invisible part of my illness. I don’t feel like me. I am really exhausted at times and still need to remind myself to say “no” (which is new to me). If someone would even tap my ear, the pain would be so intense it would feel like glass breaking in my brain. It’s tough to cope with lingering nerve problems. I also feel a little guilty about complaining. As women, we’re conditioned to simply say we’re fine and push through it. And I’m so used to hustling that it can be tough to be honest about how I’m feeling and what I need. I’ve been following up with my doctors, meditating, drinking more water and scheduling time to prioritize my health and recovery. I’m trying to be more mindful of my stress so that I don’t experience worsening symptoms.
I felt scared and vulnerable when I thought about sharing my story, but I wanted to in the hopes that I might help someone else going through their own health challenges. This experience boosted the empathy I already felt for others with invisible illnesses. I heard so many stories from people that broke my heart. I hope my experience also encourages people with Bell’s palsy to be less afraid when it comes to how they look. It feels easier to lock yourself away when going through this, but I hope that by sharing how I looked, others will feel less alone and more comfortable with how they look. At the end of the day, I just want my experience to normalize Bell’s palsy and facial paralysis, and to reduce the stigma some people feel.
This interview has been edited and condensed.
