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I woke up with half my face paralyzed. It launched a journey I never expected

In a personal essay, body acceptance advocate and entrepreneur Katie Sturino details her recent journey into the murky worlds of Lyme disease, Bell’s palsy and Ramsay Hunt syndrome.

Katie Sturino is the founder of Megababe and a body acceptance advocate. Fans follow her regular social media features, #SuperSizeTheLook and #MakeMySize, for her takes on popular styles for any body size. She hosts the podcast “Boob Sweat” and is the author of "Body Talk," an illustrated workbook. In early September, she began to develop unusual health symptoms, which she documented on social media. Here, she shares more about that experience with TODAY.

One recent morning, I woke up with an itchy, painful ear and figured I had probably developed an ear infection. While the sensation felt unusual, I wasn’t in too much agony or discomfort, so I waited to see if it would improve. A couple days later, it had worsened, and I visited my local urgent care center. The doctor noted that my ear looked fine, but I had mentioned that my dog was recently diagnosed with Lyme disease, and she thought my symptoms could indicate that I also had been infected. To be safe, she prescribed an antibiotic to treat possible Lyme disease and I went home.

That appointment sent me into a Lyme disease research hole. I Googled everything I could about it and reached out to friends and acquaintances who had had Lyme, trying to learn as much as I could. I started feeling nervous and overwhelmed because Lyme disease can create so many varied health problems, and I wondered what that would mean for me.

A few days later, I woke up and noticed that my face felt numb. When I looked in the mirror, I was stunned. Half of my face was paralyzed — my eye and mouth were drooping. My tongue was swollen, making my speech sound slurred. I felt panicked, but I had been experiencing unusual symptoms for a few days. I thought about what the doctor had said about me possibly having Lyme disease. I wondered if this was just part of that.

After I woke with the facial paralysis, I returned to the internet. I learned that Lyme disease can cause Bell’s palsy, a condition that causes weakness or paralysis on one side of the face. I knew I needed to act fast — I’d heard stories from people with Bell’s whose face stayed like that for months. I wanted to do everything in my power to make sure that didn’t happen to me. I immediately called my doctor, who prescribed a medication that treats shingles. She didn’t know for sure, but was starting to suspect that I might have Ramsay Hunt syndrome, which occurs when the virus that causes chickenpox and shingles (varicella zoster virus) causes a shingles outbreak in the face or ear. My doctor hoped to cover all the bases if Lyme disease wasn’t the cause of my recent health issues. 

I had also learned that many people with Bell’s palsy benefited from acupuncture because it stimulates the nerves in the face. I was at the acupuncturist within 24 hours.

Time was of the essence. I didn't want to wait for more appointments or more diagnoses. By taking action fast, I hoped to minimize the damage to the nerves in my face. 

The acupuncture, along with the medication, seemed to improve my facial paralysis.

It felt scary and vulnerable ... 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.

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.