Lyme Files: Why Is This So Hard?

The shame. Why do I feel shame at something that wasn't my fault? Why, like so many Lymies, can I not tell the complete truth because of the years of non-belief I have faced from professionals to normal folk?

Lymies have been told and conditioned by the medical community and those around us NOT to talk about it.

Out of all the things these illness have stolen, the worst remains my voice. I got a lot of the other stuff back - but my voice is still silent and gone.

This was the email I originally wanted to send to my coworkers

------------------------------------------------------------------

Friends!

In the spirit of continuous improvement aka overshare. . .May is. . .TAA DAAA!

Do you know someone who had to battle (or battles) an invisible illness? Maybe Lyme and/or other tick-borne illness?

It might help to watch this Ted Talk where Emily Reach White talks about Invisible Illness and Incommunicable Diseases

And if you think, “I know a dog who had it.” Or “I heard of this stuff, but, I don’t know anyone who ever had it.”

Look at this sassy wench! Holy moly! You know that chick!

I am an official Lymie, folks. It’s a sucky club. Tick-sucky.

What this little green ribbon represents destroyed my brain, my heart, my adrenals, my eye, my spleen, my thyroid, my colon and my voice. In complete and total silence, I survived 10 years of illness, 5 years of aggressive treatment and literally beat the odds of a 40% chance of survival. It is estimated the course of treatment means I am actually past mid-life and I will not see 60.

This little ribbon represents not only my struggle, but the underground I belong to where I drive the most fragile creatures you have ever seen to the only hope they might have – a treatment center where they spend 8 hours slowly taking in medication that leaves them almost dead. Where I meet strangers in diners to talk about hope while they forget my name a second after I tell them – for the tenth time.

The picture above was during my first round of IV treatment if I could survive the first month of it, I only had 40% chance at making it.

I had a total of three infections (not counting reoccurring infections due to no immune system) in my body – one which was a drug-resistant strand of Babesiosis that required experimental treatment to kill, and the one I can relapse on at anytime.

So. . yeah. . .you f**king know someone.

What is unknown to many people is the stigma of silence around these illnesses. I have literally never told anyone the extent – first because these illness took my words from me, second it could have result in my treating doctor’s license being taken, third because no one believes you, anyway. Besides, I was far too angry, guilty and battling a feeling of shame at what I had endured.

I'm trying now. I don't know how to make people listen, I don't know how to save someone's life or bring hope - but I know if I do not speak, I never will.