After nearly a decade spent actively seeking answers to my quickly declining health and receiving nothing but confused looks and a dead end misdiagnosis, the true cause of my condition was revealed. Lyme disease. Now I am 14 months into the fight of my life against Lyme and these are the 7 truths I wish people knew about the disease that has devastated my body and attempted to destroy my life.
1. Lyme may be misdiagnosed as a spider bite.
It’s true researchers think people with something that looks like a spider bite and rash should be tested for Lyme – but not because it came from the spider, but because the symptoms resemble one another.
2. Not everyone gets the classic “bulls eye” rash.
Studies show that only 42 percent of Lyme disease infected patients remember seeing a rash.
3. It’s a serious disease, not just a tick bite and few days under the weather.
Left under treated, Lyme disease becomes chronic and neurological, affecting every organ and function of the body, including the brain. Even when treated Lyme can be hard to kick resulting in what is called post treatment Lyme disease. Lyme isn’t to be taken lightly and has even been the cause of death.
4. It is often misdiagnosed.
Lyme disease is called the “great imitator” with good reason. Chronic Lyme is often labeled as an autoimmune disorders. After years of inexplicable illness I was under the impression I had multiple sclerosis when really I had Lyme all along. Other people living with chronic Lyme have been misdiagnosed with arthritis, fibromyalgia, amyotrophic lateral sclerosis, Parkinson’s, depression and the dreaded, “it’s all in your head.”
5. Lyme rarely travels alone.
Over half of us with Lyme have also contracted co-infections (diseases acquired with Lyme). We’re warriors fighting more than one illness. We’re battling against a whole host of deadly intruders.
6. Some days we’re winning. Some days we’re not.
Actually, some hours we’re winning and some hours we’re not. Healing from Lyme disease is a journey full of ups and downs. Picture the most intense roller coater you’ve ever seen and then multiply by it by 10. This is the Lyme life and it is more intimidating than any ride at Cedar Point.
7. It’s not you. It’s Lyme.
If I appear frustrated, angry and annoyed I promise, it isn’t your fault. I’m not mad at you. I’m mad at Lyme. I’m disgusted with disease and weary of the fight. I’m tired of living with an invisible illness and dealing with the daily saga of symptoms that no one can see or fully sick. Simply put, I’m sick of being sick.
To my fellow Lyme warriors, don’t give up hope because there is a future beyond the Lyme life. Keep fighting because your disease is going down.
Originally published on The Mighty