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 pain, mental 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 when raising 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 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 are 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% 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.