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The Reality of Living With Chronic Lyme Disease

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The Reality

My name is Tori Ashdown and it’s 4 a.m. on September 19, 2016. A normal kid my age would be more concerned over the fact she can’t sleep because she has class today. For me, it’s different. I am on the sideline of my life, watching everyone run this huge life marathon that means so much to me. I sit and watch them pass every single day, and the sideline is a dark and lonely place. I should be a junior at Wentworth Institute of Technology in Boston, Massachusetts studying interior design, my dream. Actually there are a lot of things I “should be” but cannot be because of this illness. For now, I lay awake and accept myself as I am. Not what I could be, but the human I am lucky enough to be now and the life I do have. The future will remain waiting for me.

December 6th, 2010

My life was flipped upside down overnight. On December 6, it will have been six years. Six years from when I woke up in the worst pain of my life and couldn’t lift my head off my pillow when I had been a normal, healthy freshman in high school the day before. It’ll be six years of a war battling inside me, six years of chronic pain, six years of living with a broken heart, six years of living with a constant migraine no medication in the world can make go away, but most of all it will be six years of living with Lyme disease. I am a Lyme warrior, and I am not ashamed. The color blue lately has been trying to make me feel ashamed. I am sick of looking at blue ice packs every time I reach for them in the freezer, and I am sick of going to bed every night with my blue ski hat, packed with my blue ice packs, with my blue cooler sitting next to my bed filled with more blue ice packs so I can change them throughout the night each time the pain wakes me.

The Pain

Living with chronic pain is not the ideal life, but I manage. When my muscles twist in my legs, the awful spasms feel like someone lit my legs on fire, sometimes preventing me from walking. My head will hurt so bad I will vomit and not leave a dark room for days. My bladder constantly hurts, and I find myself in the bathtub in the middle of the night more often than my bed. I wake up soaked from night sweats and laugh at myself when I tremor and cannot use my young hands to take a picture. I eat soup and Popsicles more than any other food because my throat constantly hurts and my glands and lymph nodes are always huge. The anxiety has to be one of the worst symptoms. Imagine the most immense fear you have ever felt in your life, then multiple that by 10. You become paranoid. Straight A’s – yeah, they used to be a thing for me. Now my memory and concentration is awful, and I am on an education plan when I am in school to help me succeed. The list goes on forever.

The Neglect

I shouldn’t be ashamed, but the bigwig doctors and world-renowned hospitals should be for allowing this to become such a huge hidden epidemic with no cure and all of this controversy over “chronic Lyme disease” being real. Yes, it is real. Insurance companies should be ashamed for denying our treatments and authorities that could have a say should be ashamed for letting this go on instead of speaking up for us. This is only an issue when someone “important” gets sick with Lyme – someone in the government, a celebrity, etc. Our pain is real, our scars are real, our aching hearts are human; we are real people too, living with a chronic illness every day with no cure and nowhere to go. It would be a dream if somebody called and said, “Come on in. I know how to help her. I can make it go away.” But that doesn’t happen. Instead, when I am at my worst – blood pressure nearly bottomed out, a raging fever, an erratic heart rate, the worst pain you could ever imagine, fighting for my life as I am hooked up to be stabilized – that is when the nightmare sets in.

The Heartbreaking Truth

Once I am stable, I wait. Hours on end for someone from the infectious disease department to come see me, to come help me, to come make me feel safe. Hours go by, and then the whole day. When they finally walk in I hold my breath, waiting to see what they have to say, hoping that maybe, just once, they will believe me. They will believe my pain is real, they will be highly educated in Lyme disease and maybe they will know what to do next. When they finally speak, I hear the words every Lyme disease patient fears. “Your pain is not real. You are psychosomatic and need to seek psychiatric help.”

I begin to cry but they don’t care, so my parents try and explain. “OK, so if it is not Lyme disease, what is it? Why can’t you help her?” They don’t listen. I have a label, and unfortunately it is a bad one to have in the medical field. I hope 10 years from now this label will not be frowned upon — it will be taken very seriously. I cannot even imagine the outbreaks that will eventually come out.

It would be a dream to have a doctor at a world-renowned hospital believe me and have a cure. Instead I seek medical help anywhere but the world-renowned hospitals and find the small hospitals in the middle of nowhere. This is where my Lyme disease specialist tries to help me, but my case is so complicated and he has so many sick patients that it is hard for him to know what to do. I have been a patient of his for almost five years. He has seen patients come in just as sick as me, and walk out a new person months later. Then there are the few patients like me, whose symptoms are just too complex. The Lyme disease is too far gone — spread throughout my organs, my muscles, my tissues, hibernating inside my body, eating me alive and shutting down one bodily system at a time. It is patients like me for whom there is just too little research, everything is too complex and the doctors just don’t know what to do. All they can do is try to better educate themselves and try and make me better.

We become our own advocates. Our parents dedicate their lives to us, researching, learning, educating themselves and slaving away to pay my medical bills. They have watched their little girl struggle for six years now. What else are they supposed to do but help try to save my life? I know I would do the same thing for my own kid, but watching them fight this disease with me has taken a toll on them and there’s nothing in the world that will change that.

Then and Now

For now, healthwise, I may still be that 15-year-old girl who pushed herself through high school and graduated on time, despite missing her whole sophomore year, instead learning from tutors who kindly came to her house. I may still be the girl not everyone can understand unless they have been there, felt my pain and walked in my shoes, but I would wish that upon no one. As my 21st birthday approaches and I sit on the sideline, I think about my label: “Lyme disease.” Yes, I have Lyme disease, but no, I am not embarrassed to admit so. I may not have the life I asked for, but I am making the best of it and sure am a hell of a lot stronger because of this battle. Remembering HOPE: “Hold On, Pain Ends,” I continue to fight on even though this disease has taken six years of my youth, years that should have been the prime of my life. I keep busy doing yoga when I can, teaching dance, dancing through my emotions, painting, writing, leaning on my friends and family and of course keep myself busy living as a Lyme disease warrior – now an advocate and enthusiast for those with Lyme disease who don’t have a voice.

I Am Not Ashamed

My name is Tori Ashdown and I have Lyme disease, but Lyme disease does not have me. I am not ashamed of my label, but this is the story of finding my destination as the healthy, young woman I need to be. This is me at four in the morning telling you a fragment of my six-year-long battle, having a voice for so many people that are sick with Lyme disease. Now that you know me, follow my story. Watch me speak up, watch me fight, watch me live in agony, watch me fight to find a cure with or without doctors. However, there is one thing I can promise you: you will not watch me give up – and that is a promise I intend to keep.

Until next time,

Tori Ashdown

A version of this post originally appeared on The Odyssey.

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Originally published: October 14, 2016
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