Real Talk: Living With An Invisible Disease
What do Alec Baldwin, Bella Hadid, Ben Stiller and Avril Lavigne all have in common? Besides their celebrity status, they all suffer from Lyme disease. Never heard of it? Well, as of 2013, over 300,000 people in the US were living with Lyme disease.
The illness is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Yup, it's that simple. A simple tick bite from a day at the beach or a hike in the forest can turn into one of the most pivotal moments of your life. The illness can range in symptoms from fatigue to body pain, from memory loss to rashes, from nausea to, even death.
As painful and isolating as this disease may be, many of those who suffer do not outwardly appear ill. Did you think of a sick person when we mentioned those names above? No. On the outside, people may seem healthy and vibrant. But on the inside, this painful, often misunderstood, illness is wreaking havoc on their lives.
To understand the true nature of this invisible illness, we sat down with Sheena Birrittella, a Lyme disease thriver, who is determined to remain bright and radiant throughout her struggles with the disease.
How many years did you go undiagnosed?
We think that I’ve had Lyme disease since I was a kid. I grew up on 20 acres, up in Northern California. There were tons of animals. I even had a pet deer! So, I was getting bit by ticks all the time, but there was no awareness of [the severity of Lyme Tick Disease]. I would get a tick bite, we’d pull it out and not think much of it.
Throughout those years, did you know that something was wrong?
As a kid, I had weird things going on. I was tired all the time. My body would hurt me. I’d have seizures. When I was 19, I started developing really bad hand pain, like arthritic pain. It was so bad that I had to stop playing piano and that was the joy of my life. It was so heartbreaking for me. Then, when I was 22, I got really sick for a year. But, the doctors didn’t know what it was. The body pain was so severe that I would cry from the littlest things touching my skin.
How did you finally figure out that you had Lyme disease?
When it got really, really bad, it was 2012. I was really scared for my life because I felt so ill. I was in treatment for a parasite and seeing all sorts of people. I was doing whatever I could. It got so bad to the point that I thought, “I’m going to die.” The doctors that took my insurance didn’t know what was going on. They thought that I had IBS, fibromialga, or arthritis. So I found a holistic doctor, that didn’t take my insurance, to help with my treatment. He [noticed] that I had all sorts of symptoms of Lyme disease. He asked, “Have you ever been tested for ticks?” So, he tested me then.
What was your reaction to hearing the news?
I wasn’t really surprised, but I was totally devastated. I’ve known people where I grew up who have died from it. People were not getting better, people couldn’t have children. It was kind of like a life sentence. It took so much strength to be able to move forward and be happy.
What does your treatment look like so you can function?
I’ve had to really learn to put my health first, unless everything else falls a part. I have to make sure that I rest, when I need to rest. I have to really put my health first, unless I suffer. I wake up, I juice in the morning. Right now, I eat raw until dinnertime. I can’t really go out to eat. I spend all of my money on organic food and supplements. I go to acupuncture and take Chinese herbs. There was a time when I was going in every single day to get IV treatments. It’s also been a lot of spiritual work for me too. I’ve had to learn to be happy despite this.
How do you live such an outwardly happy and radiant life?
I think I’ve always been a person that doesn’t want to put my baggage on other people. I think that the reason that some people don’t know [that I’m sick] is because I want to be happy. It’s taken a lot of work.
Have you ever been told that you don’t look sick?
It’s not that people don’t believe me, it’s that they have no idea. It’s not something that I hide, but it’s not something that I talk about. Who wants to hear about how bad you feel all the time?
People will say, “You’re always smiling. You’re a happy person.” But once they do ask me about [being sick], they’ll say, “I had no idea.” Most people don’t see me on a daily basis. They see me for a couple hours. So it’s not that people don’t believe me, it’s that they’re surprised when they realize how hard I have to work to function.
What is something that people don't know about Lyme disease?
The most stigma is in the medical world, from doctors who aren’t taught about it. There are so many people who are suffering with it and don’t even know. There’s so much research that needs to be done. We have to find a cure that’s accessible for everybody. There needs to be, not only awareness, but action.
Sheena is on a constant journey to wellness and hopes to seek intensive treatment for her Lyme disease. Her friends and family have started a Go Fund Me account to raise funds for Sheena to be admitted into an intensive treatment center in Arizona. If you'd like to contribute to Sheena's wellness journey, you can contribute here.
You can also learn more about Lyme disease or donate to the Lyme Disease Association here.