You may look at me and assume I am healthy. And to be honest, so did most friends, family members and doctors. But, the truth is, this is what Lyme Disease looks like.
On the inside there is pain, nausea, fatigue, exhaustion, anxiety, heart palpitations, numbness, muscle cramping, headaches, and disease. On the outside there is the strength of a woman trying to fight through each day without anyone seeing the struggle.
Lyme disease is something that, in my opinion, the medical field does not discuss enough. It is something that far too many people are fighting without a diagnosis. We are misdiagnosed time and time again and why? Is it because they do not know this disease exists? No. Is it because we do not show the signs and symptoms of this disease? No. It all comes down to a lack of awareness and ultimately a lack of attention to detail. You see, it has been my experience that doctors are too concerned with how many patients they can squeeze into their day and are therefore not actively listening to their patients. I cannot begin to tell you how many times I walked into a doctor’s office and waited for over an hour just to be put into a room where I would continue to wait. When the doctor finally walked through that door, my hopes were through the roof – today would be the day that this all got figured out. Today would be my answer. He/she would shake my hand and walk right over to the computer. Sit down and begin asking questions as he/she typed.
“So, why are you here today?” the doctor would ask.
Frantically searching my internal list of symptoms I began rattling off my entire medical history. When these symptoms started, what my diet and exercise is like, what I think it may be, etc. And then without fail, I would be interrupted with my two favorite questions.
“Are you pregnant?” the doctor would ask.
“No” I would reply.
“Ok, it sounds like stress/anxiety. Are you stressed?” the doctor would ask.
Isn’t everyone stressed? After a deep inhale, I would reply “I suppose but, not any more so than usual”. From there the doctor would hand me a piece of paper for a prescription to fill as he/she explained they were uncertain of what exactly is going on but, wanted to see if this would help.
Often times, I wouldn’t fill the prescription but, I must admit that over the past year (out of pure desperation), I began filling them. Valtrex, various steroids, Bactrim, Prilosec, creams, ointments, pills, etc. were some of the prescriptions I have filled over the past 12 months. I have had biopsies, cortisone injections, ‘migraine cocktail’ injections, ultrasounds, CT scans, blood work, appointments with Gastroenterologists, Dermatologists, and so much more. I have been diagnosed with anxiety, depression, eczema, ringworm, cellulitis, the flu, sinus infections, altitude sickness, exhaustion, and bronchitis just to name a few. Yet, the one test I asked for on several occasions was denied – a Lyme disease test.
Why would a doctor deny an avid hiker from New England the chance to get tested for this disease? To the best of my knowledge it was because I did not currently have a bulls-eye rash and could not recall the exact moment I was bit by a tick. My stress and anxiety raged within my soul as I began to believe perhaps I was just crazy. Am I a hypochondriac? Is this all in my mind? Finally, I decided to see a holistic practitioner, Maddie Slomiany. Just over one year of my symptoms beginning, I walked into Maddie’s office. She greeted me with a hug and had me take a seat and start from the beginning. She took notes about my story and encouraged me to share as much as possible (even those symptoms that you wouldn’t think to share). Once I was done explaining the past few years of my medical history she thanked me for sharing my story with her and asked a question “have you ever been tested for Lyme disease?”. I felt the tears forming in my eyes as I started to think no one would ever ask. I explained that I hadn’t but, would be grateful for a test. Here was a practitioner, in Colorado, explaining that I moved from Connecticut, where Lyme Disease was discovered and named. She was convinced this was our answer.
Sure enough, the test came back positive. Because I have had this disease for so long there are other co-infections and damage that needs to be repaired. Had I not found Maddie when I did, I am not sure I would ever have discovered the root of my problem. So, why am I sharing this with you? I am sharing this with you for a few reasons.
First and foremost, to let those who think they may have (or know they do have) Lyme Disease know that you are not alone. Do not stop advocating for yourself. Do not take no for an answer. Do not allow all of the misdiagnoses the opportunity to shake your spirit. Do not lose faith. It all comes down to finding that one person who will look you in the eye, feel the pain you are describing and invest in discovering the root cause instead of blindly treating some of your symptoms. You deserve to work with someone who can look past the fact that you don’t “look sick” and see what is actually happening on the inside. If there is even the slimmest chance you may have this disease, get tested!
Next, I share this with you because there are still many who do not understand my struggle. I do not entirely expect you to understand however, it is my hope that you will begin to approach my situation with the same level of compassion that I would approach you and your life situations. Yes, there are many people with this disease however, my journey has been different than those you may have heard of in the past. My journey has been nothing short of a long battle and while I am currently undergoing treatment, that does not mean this road has come to an end. It is only just beginning. So, I ask that you do not judge my form of treatment, what I choose to do with the little energy I have left or the amount of time it will take me to begin healing. I humbly ask for your compassion as a fellow human struggling to live the life I long to live.
Lastly, I share this with you because it is my hope that this disease becomes something we all take more seriously. It is my hope that through sharing my story and advocating for all of those impacted by this disease, the medical field will begin to wake up and listen to our stories. It is my hope that my one small voice can help trigger a wave of change because, no one deserves to be robbed of years of their lives battling in silence.
So, if you didn’t know what Lyme Disease looks like – this is it. If you know someone who has this disease, please reach out and let them know that you are there for them. And if you know nothing about Lyme Disease, start educating yourself because you never know if one day you will be in my shoes – www.lymedisease.org
Contact Arielle Coree with questions and or personal stories at: www.tinyurl.com/ariellecoreeco