My symptoms started when I was around ten. Concentration in school did not come easy and I struggled to retain information I was supposed to be learning. I was diagnosed with dyslexia and went to specific classes to support learning disabilities. At the same time, my immune system was very weak, and I would also catch every cold and flu that would circulate the school. When I arrived at high school, I started to participate in group sports. Volleyball and song team practices were rigid and very physical on the body and mind. The other girls kept up, however, it was a struggle for me. I was so fatigued, my body consistently ached. It was worse than growing pains and presented itself widespread through my body. My fatigue was debilitating, and I could not get out of bed. Yet at the same time I struggled to fall asleep and truly rest. My adrenals were stressed and was presenting itself with the wire-tired effect. I struggled with severe gut issues, irregular bathroom habits, dysbiosis, candida and ongoing stomach pains that put me in the hospital a few times. I also developed weird allergies to foods I never had problems with before. It felt like I no longer felt like me and it began to take a toll.
At this point, I finally got the attention that something was wrong, my mother took me to see a handful of specialists. One diagnosed me as a "dramatic teenager." Can you believe that? They seriously thought I was faking it! That alone spun me into depression. My anxiety was at an all-time high, I did not feel safe or comfortable around my family and friends. The continued fatigue and lack of proper care led me into a dark depression, anxiety, and mood disorders. I was sensitive to everything and everyone. Obviously, the consistent symptoms I was experiencing made me irritable and unhappy. My hormones were not regulating, and my menstrual cycle was totally off. I did not know who I was anymore, and I felt I had no purpose.
After 10 plus doctors later another specialist told me I had a gluten allergy, so for the next 13 years I embarked on a gluten-free journey. They had no delicious and healthy gluten-free options for the traditional teenage loving foods. Just another reason I became an outcast; "weird" in other terms. At this time, no one knew what I was dealing with, and I was not open about being gluten-free. I hid my struggles and my life from friends and the rest of the world. I no longer was the outgoing, loving, confident and determined young girl I once was. I no longer wanted to spend time with groups of friends, go to parties, socialize. If I could just disappear and stop burdening my family and friends; was the daily thought, going through my head.
Lyme not only affects your life but all the lives around you. My family struggled not understanding what was wrong with me for years. My friends struggled to connect with me and how to help. People did not see the suffering inside me because on the outside I seemed normal. Many of my symptoms besides hair falling out and occasional rashes were physically present to the eye. I struggled not being able to articulate how my body felt or even remember what I wanted to tell the doctor from the following day. When someone is battling such a life-altering disease, it creates a ripple effect to the ones you love that suffer alongside you. In summary, the effect was life-altering.
Through my extensive online research trying to find answers and a community that could understand, I stumbled upon GLA. I flew to NYC and attended their annual Gala at Cipriani in 2017. I was really looking for answers and hopefully someone who would understand what I have been going through. I soaked in the event, speakers, and connected with guests. It was such an emotional experience not only for me, but also for my parents. My table guest had a similar story to mine; I instantly found a place where I felt understood. They had words to explain what I was feeling. I have always been a person who gets involved when I care about something, so I decided to focus my energy on supporting GLA and making a difference for the Lyme community.
After attending the Gala, my family made a large donation to GLA to support their research funding efforts. I wanted to do more, so I joined the ambassador program for GLA. Recently, I have joined the board and I am thrilled to get more involved in raising awareness, funds, and moving the needle– providing hope to those suffering with Lyme.
I am truly thankful for GLA and the board for working diligently on finding answers. Funding research to understand the Lyme bacteria and how to eradicate it. Looking into new treatment options, improved testing, and eventually leading to a cure for those suffering in silence. They also provide resources and support for patients and families. The answer to this disease is collaboration sharing our knowledge and stories so we can find an answer.
My theme this year is to give HOPE to all those Lyme warriors. It is possible to live a normal life and even beyond a normal life.
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To read more patient stories, visit GLA blogs.
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.