Why I'm Urging Everyone to Learn About Lyme Disease

Many people with chronic medical conditions live with an illness that is invisible. Lyme disease, certain types of cancer, chronic back painmental illness, autoimmune conditions and neurological disorders are among a few of these invisible illnesses.

Would chronic and invisible illnesses get more recognition, understanding and awareness if the patients looked “sick?” It is a sad and unfortunate reality that our society often turns a blind eye if the illness can’t be seen.

There is a phrase I use often in the Lyme disease community and awareness: “People don’t get it unless they actually get it.” Many might care more about Lyme disease or autoimmune conditions if they could actually see that condition or have it themselves. Many of us look completely normal on the outside, yet we are very ill. The unfortunate part is that there are over 329,000 new cases of Lyme disease in the United States every year. Preventable with the use of tick repellant and the knowledge of the symptoms. An accurate diagnosis and adequate treatment can prevent long-term issues with Lyme. Once Lyme disseminates through someone’s body, it is very hard to treat and some even argue if and how it is treatable once it becomes chronic or persistent. Like any other serious conditions, Lyme Disease can completely morph your life, causing disability or even death.

To me, the most unfortunate part is that many people only learn about the symptoms of an illness after seeing how sick someone looks. Awareness and understanding is often set aside for those who “look” ill. Sadly enough, those of us who are struggling with an invisible illness or disability are left in the dark, fending for ourselves, and are usually widely misunderstood or judged by everyone or most people we know.

My plea is for all of you to be aware of Lyme disease and its prevention, diagnosis, symptoms and treatment. Know that the main diagnostic test for Lyme disease (a two-tiered ELISA/Western Blot blood test) is inaccurate and misses up to 60 percent of early-stage Lyme cases, which is why so many go undiagnosed or incorrectly diagnosed. This information could save you or a loved one’s life. There are half a million patients struggling with long-term late-stage Lyme and there are cases reported in all 50 states. Chances are, you have probably seen or heard of someone having it. So please, don’t disregard our stories or awareness posts on social media. The same goes for any other chronic and/or invisible illness. Ask us about our illness. Spread the word because knowledge is power – and it just might save someone’s life in this instance.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via artlazareva.

Find this story helpful? Share it with someone you care about.

Related to Lyme Disease

Silhouette of young man sitting on sunset or sunrise. Confident teenage boy thinking on cliff stone.

A Call to the Men Battling Chronic Illness Alone

It’s quite possible I’ve written these words for a post on Facebook, or an email to family and friends multiple times only to end up trashing it based on thinking I’d be viewed as weak, ridiculed for not being “man enough.” Many times I wanted to reach out to a male friend early in my illness, [...]
hand turning off lightbulb

Why My Brain Fog Feels Like a Light Switch

The process of recovering from neurological Lyme disease kind of feels like having a light switch controlling your brain. When the lights are on, you can actually accomplish stuff. However, at any given moment the lights can flicker, dim, or simply be turned off. You never know when that switch will be flipped off, or [...]
dark tunnel with light at the end

When You're in the Dark Tunnel of Searching for a Diagnosis

Sometimes you feel as though you are trapped in a tunnel and no matter how hard you look, you are unable to see the light at the end. This is often what it feels like while searching for a diagnosis. I have been in this boat a few times. It took me two years to [...]
flowers with dew drops in front of aqua background

The Meditative Principle I Use to Stomp Out Bitterness Over Lyme

When I first got really sick with Lyme disease, my heart sat soaking in a pool of bitterness for months. I was so consumed with my own grief and loss that I began to resent everyone around me. I didn’t want to, but every time I saw someone else doing something I used to love [...]