Rachel

“I didn’t think it would be so difficult to write this, but as the words come out it almost feels like I am writing about someone else. Do you ever ask yourself, ‘How did I end up here?‘ In the good and the bad moments, I now ask myself this question almost every day. 

I have chronic Lyme disease. Living with a chronic illness has changed my life in ways that I could never have imagined. I am writing to you from a much better place than where I was a few years ago, but what most people don’t understand is that each day is still a struggle.  Each hour, minute, and even second can feel different in your body when you are battling a chronic illness, especially one that is as misunderstood and hard to treat as chronic Lyme. My experience is that the daily and even hourly fluctuation of symptoms can be so hard to understand for friends, family, and co-workers, that I can feel all the more isolated and misunderstood. I talk to people with chronic illnesses every day and this is a common experience among us. If I were to put it as bluntly as I could, I would ask all who have their health and don’t live with disabilities from illness to please dig a little deeper for compassion. 

The emotional and psychological symptoms of Lyme and co-infections started long before I was even fully aware of them. Exhaustion. Depression. Anxiety. Fear and loss of control. Then the severe physical symptoms came on.  

People often ask me what the symptoms are, but the truth is that they are different for everyone with this illness. For me, they were (and still are) severe headaches, dizziness, nausea, numbness, and debilitating exhaustion that nothing could take away. Excruciating pain in both knees, ankles, joints, and throughout my entire body. Nerve pain. Skin sensitivity.  Blurry vision. GI issues. That ‘getting the flu’ feeling. Swollen glands. Fevers. Chills. My skin and legs looked blotchy, red and slightly swollen. I could barely get up or walk a step.    

My life felt like a literal hell on earth. I was living in a nightmare, and I couldn’t wake up. It became increasingly difficult to do anything. Driving, working, and social gatherings were starting to become few and far between. I started using crutches to get around, and sometimes a wheelchair.  

I felt like I was falling apart, and I was so afraid I was dying.

I didn’t know much about Lyme, hadn’t ever given it much thought. And I had no idea it could cause the symptoms I was experiencing.  

Each doctor that I saw only made me feel more invisible and more alone, and completely dismissed. After dozens of standard tests, there was no explanation for my pain. There was nothing visibly wrong. The trauma and gaslighting by the medical community had stripped me of any confidence and trust in them, and in myself.  

In my heart, body and soul I knew that something wasn’t right. Something hadn’t been right for quite a while, and I couldn’t even remember the last time that I had truly felt well and like myself. I kept at it and kept searching and fighting for an answer, because my life depended on it. Finally, in February of 2020, I made the decision to see a Lyme specialist and right away she ordered a more accurate and specialized lab test for Lyme and co-infections – it came back lit up, active and positive. Lyme was something that no other doctor I had seen would even look into or entertain as the cause of my symptoms.  

I don’t know how or when I contracted Lyme disease. It sounds crazy that something so small, a tick that was potentially the size of a poppy seed, could have this effect on my life.    

This disease has shaken me to the core, brought me to the lowest and most raw moments of my life, and has also given me my greatest purpose through my pain – to give others hope and to help them heal. 

I got a coach soon after my diagnosis to help me navigate the many layers of pain – from physical to emotional. After working with her for years on my healing journey, I have uncovered layers of trauma, limiting beliefs, and self-deprecating thoughts that have all led me to where I am now, and all seemingly contributed to my illness in one way or another. My nervous system and my body were on fire and completely overloaded, and they were screaming for help. I wish I had seen the signs sooner.  

In my life I have experienced different levels of trauma through being a premature baby, a move to another state at a very young age, my parents’ divorce, an eating disorder, loss, grief, and a series of relationships that were so emotionally damaging that I didn’t even think I deserved to be loved and find a true partner. I thought that something must be wrong with me, somehow this must be my fault. I also thought that illness was my fault and that I was being punished for something – that I deserved to suffer.  

The truth that I had to uncover is that none of these things are my fault. They are no one’s fault. I was so naive and uninformed about trauma, that I didn’t know how to ask for help or even that I needed to – I think this is a truth for so many of us.  

Today I am not at a hundred percent and am still deeply on the road to healing, but I am in a much better place physically and emotionally than I used to be. I still have ups and downs, bad days and better days, and I am so grateful for every moment. I have tools in my healing toolbox, and resources to support me. I have learned so much about my health and I know how to listen to my body.  

I love more deeply. I hold on to hope and faith. I realize my inner strength and power. I laugh.  I cry. I do things that bring me joy. I cherish my relationship, family, and friendships, and every moment that I am no longer fully bedridden and completely housebound. I feel so much more free.  

One of my saving graces throughout this journey has been talking to others who have been there and have gone through some of the same experiences. I have leaned on them so deeply for support and guidance along the way. I have been working with my own health coach for over three years now, and it has truly been one of the most uplifting and life-changing decisions of my life. Going through such a harrowing health journey has given me an unwavering passion and desire to help others going through this same journey of Lyme and other chronic illnesses. I launched a coaching business of my own and I haven’t doubted for a second that this is my reason and my path in life. I have never felt more sure and more grateful to be able to help others heal, transform, and thrive during illness and whatever challenges life brings.  

If you take anything away from this story, please let it be this: don’t ever doubt yourself and your intuition. You know your own body, and you know when something isn’t right. Learn to trust yourself and be your own advocate. Your truth is all that matters. There is hope in the darkness of illness, I promise.  

I wish more people understood that just because someone may look fine – even great – on the outside, that is not a reflection of the pain that they may be feeling underneath the surface.  

We are not faking being sick, more days than not we are faking being well.  

Be kind and compassionate to others. And never take a moment of your health and this life for granted.  

And never give up.”

Rachel
Virginia, United States