Lyme Disease: The Invisible Illness

I recently teased my parents that my life could be broken out into chapters of illness.

My childhood was years of hospital visits with severe asthma, my teens were years of battling Lyme disease and its co-infections, and my mid-twenties has been degenerative back disease, hip dysplasia, and AVN. 

In each season of sickness, I’ve found consolation through writing. I’ve always felt empowered that my story could help others. I recently came across an old blog post about my experience with Lyme disease and one of my co-infections, Babesia. This past year during my back and hip health journey, I’ve had to take antibiotics to prevent a Lyme disease relapse because of the inflammation and surgical impact. Luckily, I haven’t had any indications of one but it’s still a huge lingering fear of mine. 

The worst thing about Lyme disease was that it was invisible. I felt a constant pressure to justify how I felt because no one could see it. During my recent health crisis, my hip and back issues were visible. You could see the problems on x-rays and MRI’s and you could see the affect through my walk. 

With Lyme disease, you can only see the sickness through blood tests. In my case, you could sometimes see it through the bags under my eyes or tremors. I was diagnosed when I was 14 years old but doctors think I’ve had since I was between the ages of 5 – 9. Due to this late diagnosis, it was harder to treat and became a chronic diagnosis. I’ve been in remission for 4.5 years but I used to have frequent relapses. My symptoms included:

• Dizziness
• Face Palsy 
• Fatigue (sometimes sleeping 16-20 hours a day)
• Insomnia 
• Joint pain
• Memory loss
• Tremors

A lot of people with invisible illnesses find creative ways to hide it. For me, when I was fatigued, I yanked out concealer. When my tremors were bad, I held my hands against my legs. When I had face palsy’s, I let my hair down to cover my face. Having an invisible illness was easy to cover but it didn’t take away how I felt underneath. 

Over the years, I’ve spoken with many people who have Lyme disease and they each share another similar frustration: Some days I feel good and other days I can’t get out bed. I don’t want people to think I’m faking it.  I remember those same feelings. When most people get sick, they can take time off work to recover and are feeling better by the next week. Living with a long-term or chronic illness means that you have to fit your life into your recovery. In my case, I couldn’t take seven years of my life out to recover. I had to try to live while I experienced the illness. This meant I was “flaky”; some days I was fine and the next day I couldn’t get out of bed.

I remember missing out on a lot of things. I missed a lot of school, I couldn’t hang out consistently with my friends, and I was sleeping away most of my life. This made me want to use my rare “good” days to the fullest. On those days I would take a few tests while my memory was working, go for a run, and hang out with friends. I tried to fit as much as I could into good days. This usually made my next day a really bad day.

This is an excerpt from the post I came across:

Chronic illness is not a black or white subject – everything it consists of is grey. Understanding it is incredibly complex. But here’s a breakdown of some thoughts that people should consider:

1. Having a chronic illness doesn’t necessarily look like anything. It feels like the flu with frequent aches and pains. We don’t want to look sick all the time so we’ll find creative ways to hide our symptoms.
2. People with chronic illnesses still smile and laugh. It’s an option to choose misery or happiness. Dwelling on our circumstances won’t fix anything.
3. We might not tell you how we feel. It might be a bad day but we want so bad for it to be good so we’ll challenge ourselves to stay out with friends 15 more minutes, stay up and finish the movie, or tag along at the gym (slow on the treadmill maybe, but hey we’re doing it).
4. Some days are really good. Some days we feel like ourselves and do normal things. Just because we get the opportunity for this does not mean that we are magically all better for good. Treatment is a process and a journey towards health. This is a cliché but it’s so true: one day we might be one step forward, and the next we could be two steps back.
5. Just listen. Unless you have a PhD or have experienced their diagnosis, don’t tell an individual with a chronic illness how they should feel or question them for being “alright” last week. Medicine days are worse. People with diseases like Lyme disease and Babesia sometimes have herx reactions (short-term detoxification reactions) so on our medicine days, we might need to stay in bed. We’re not being lazy, we just feel like we have the flu.

And to other people reading this who live with a chronic illness: you’re not alone, I cover it too.

Young Courtney had some solid take-aways. Since my experience with Lyme disease, more and more people have been diagnosed with it. After Avril Lavigne went through it, she released the song “Head Above Water” which is a perfect hype song for any health crisis. You never know what someone is going through. Treat people with kindness and know that sometimes people are facing invisible battles.