In Our Own Words

Want to know what it’s like to have a Tick-Borne Illness that affects the body in different ways everyday, with no timeline of when there will be an end to the pain? Here are some quotes from those who suffer from Lyme and other Tick-Borne Illnesses. I hope this helps others to understand the nature of this deadly disease.

Lyme Disease: In their own words…

“Lyme disease has taught me how to be a soldier and move forward, for my family and I regardless of my pain and fatigue.” –Nicole

“What do you do when you are in chronic physical pain? It never lets up and continues every second of your day. It is like it sucks your very soul out of your body and you start to lose yourself. There is no longer an option to be strong. You just want to survive. You want to understand what’s making your body hurt so bad. What do you do? Physical pain disrupts your emotions, your will, your motivation, your inner peace, your everything.”  –Angel

“I ventured to one game of my sons tonight. It was very hard, as being outside bothers me more. I just looked straight ahead and didn’t move my head. No one talks to me anymore, which I couldn’t do anyway. I know they just don’t know what to say, even though I have known them for 5 years. I was extremely dizzy and the world was spinning. I had no idea what was going on, but I figure, at least I’m trying. I pray and hope to get out of the wheel chair someday and walk.” –Rachel, Missouri

“I want to get things done and push and push myself and then when I don’t get it all done I get so frustrated with myself.” –Melody, Virginia

“I wake each morning trembling with pain. After an hour of waiting for pain meds to kick in, I make it to the bathroom. I venture to the kitchen to make coffee. My room is pitch black or so it seems. My eyes are closed and remain that way nearly 80% of the day. My son, who is five, doesn’t know I am really sick. He says I’m boring. I take him to the park, snap a couple pictures and close my eyes. He drags me out of bed every 5 min to look at this and look at that. I have learned to just lay in his bed. To him, I am the best. He tells people I got smashed in the army. I have abandoned all aspersions of truly making it out of this bed.” –Lyme sufferer, Illinois

“I lost my car, job, health, vibrancy, and beautiful hair along with my nerves, peaceful sleep, sense of purpose and muscle tone. I am scared. I have been treating it for a year and am still incredibly messed up. I only had it for 2 1/2 years before proper diagnosis, some people have it much worse than I do. I can’t imagine their scare. I, Lara, vow to get well. I vow to participate in my treatment, even if it means enduring temporary physical, emotional, and mental changes in my life. I vow to stick with this course of treatments and not look back. I vow to do everything in my power to heal and to live.” –Lara, Houston

It is time for the voices of the Lyme community to be heard. We will not go silently. Our lives are on the line. I will not stop advocating for this terrible disease until the CDC, ISDA and insurance companies have changed their policies, so that people fighting Lyme Disease can have a chance for wellness. Prevent. Educate. Advocate.

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