This Is, Rachel...
In a fight against her own body, Rachel has found a place of acceptance. A place where she can look at the obstacles, set backs, and pain that comes from living with this disease, as part of her journey. As part of what makes her the strong, resilient, adventurous, and brave human that she is today. That she always has been.
Rachel has learned what it's like to be ok with not being ok. To see all that she's done as every reason to not just live, but thrive. To show up and allow herself to be seen, even if that means feeling vulnerable or out of place. To take her past experiences and build off them, even lean into when things seem impossible. To use them as tools to help build a life for herself beyond the limitations of Lyme.
This diseases pushes us to be brutally honest with ourselves, to face parts of ourself that we are scared to face. To be there, trusting, believing, and fighting for a life more than. For the life you deserve to live, even if it's slightly different from what you expected.
This is Rachel's story...
I never realized how much I took for granted. The little everyday tasks— working, cleaning, shopping, going on a run, even driving. When my body could no longer do what I asked it to do, it really put life into perspective. My goals, dreams, and priorities were forced to take a different turn. I could no longer take care of my failing body on my own. I became so physically drained that I had to quit my job, move back home and let my family take care of me. For the longest time I didn’t want to acknowledge that my body wasn’t functioning properly.
If I let myself be sick then I would have to press the pause button on my life and deal with the disease that was going to change everything.
Like most Lyme patients, my illness began with a myriad of unusual symptoms followed by countless doctor visits and several misdiagnoses. I never recall getting a tick bite and I never had the classic bulls eye rash that is used for detecting Lyme. For months and months doctors told me that nothing was wrong with me. I had anxiety and needed to see a psychiatrist because all my symptoms were “in my head” and I needed to get more sleep. Even though I look fine on the outside, doesn’t mean I’m fine on the inside.
If you look past the smile thats usually plastered on my face, you’ll see a person in constant battle against their own body.
Despite what put together person people see on the outside, I have seen more challenging days than I can count. Days where getting out of bed isn’t an option and neither is being independent. Some days I need help just taking a shower or fixing a simple meal. I could sit here and tell you how my time is spent being shuffled between doctor appointments, hooked up to IVs and poked and prodded with needles, but that’s not the story I want to tell. Rarely do I talk about the reality of my everyday life because I choose not to focus on my challenges.
I don’t want to be defined by my illness or seen as any less of a human because of the limitations my life now has. I want to live in spite of it. I want to overcome it.
Next month marks one year since the start of this journey. I’ve always had a love for adventure and the unknown. Last October I packed up my things and moved halfway around the world to teach English in a small, rural town in Thailand. I had the privilege of meeting some extraordinary people and having some of the greatest experiences of my life. About a month into my teaching contract is when I realized something was very wrong. I started experiencing some very bizarre symptoms— migraines, dizziness, extreme fatigue, joint pain, tingling and numbness in my limbs and a variety of other weird flu-like symptoms us "Lymies" know too well. I was able to push on for about three months before deciding to return home. My time in Thailand was extremely difficult because I was so sick and far from home, but I continued to live in the moment the best that I could.
When I look back on my time there I don’t fixate on how sick I was, but I think of that beautiful sunrise hike with my best friends, staying up all night on the beach talking to strangers, and that mountaintop moped ride that quite literally took my breath away.
People say to me all the time, “I bet you wish you didn’t go over there. Look where it got you.” The truth is I wouldn’t have changed a thing. Living in fear isn’t really living and sometimes bad things just happen. Life can be a real jerk. We have to learn to laugh at it and find a reason to keep smiling and pushing on. It’s not fair that I got sick. It’s not fair there isn’t a cure. And it’s not fair so many people live with this chronic and debilitating disease.
After my diagnosis, I was so relieved to finally have an answer that I didn’t fully realize that with that diagnosis came the daunting road to recovery. It took a long time for me to get to the place where I could accept my illness and really allow myself to be sick. I kept trying to force myself to live the life I had before I got sick and ignore the limitations my body now has.
I believed that if I accepted I was sick then that meant I was weak. It’s hard to admit that you’re not as strong as everyone believes you are.
For awhile I mourned my old self. I missed the things I was able to do so effortlessly. You never really consider what life could be like without your health until you don’t have it one day. If anything, this illness has been my greatest teacher. My perspective has shifted immensely and I now see myself in a new light. Lyme has forced me to relinquish all control. I don’t worry as much as I used to and I just let myself be in the place it is and accept it. I no longer put so much pressure on myself to be or act a certain way. If I’m having a bad day and feel terrible, it’s okay to allow myself to feel that way. I don’t need to pretend I’m ok in fear of making others feel uncomfortable. I became so good at hiding and covering up my symptoms my life became this grand facade. How I appeared on the outside and how I felt on the inside were two totally different people. I finally had to stop hiding the truth of my disease and become comfortable with allowing others to see me for who I really am. I had to stop comparing myself and where I am in life to other people.
Surrendering control has allowed me to begin healing.
Don’t get me wrong, some days I feel like I’m constantly fighting a battle I just can’t seem to win. I still feel angry, frustrated and defeated at times, but I’ve learned to focus on the small victories instead of expecting overnight success. Facing adversity has shown me I’m a lot stronger than I believed. Nobody chooses Lyme disease. Nobody chooses chronic suffering. But through all the pain, Lyme somehow presents a rare opportunity to find our inner strength and creates a deep reverence for life and happiness.
If you’re reading this and are going through your own journey of healing and acceptance, just know that I see you.
We see you. It doesn’t matter what other people think about you and your disease because all that matters is how you view yourself. You are strong and brave and resilient. You do not need to suffer in silence. We have to be proud of the things we are able to do because only we truly understand the strength it took to do them. It’s not your fault that you are sick and you don’t have to apologize for something that is out of your control. Most people will never understand the complexity of this illness or the depth of what the chronically ill go through everyday. I used to get angry at others for not understanding. It’s not their fault, they honestly just have no idea how we feel.
I’m still at the beginning of this crazy war and I know I have a long journey ahead of me. I’m sharing my story because the only way to rise above this disease is to stick together, support one another, and talk about our struggles. Education and awareness is key to finding a cure. If anything, Lyme has reminded me to be kind to everyone because you never know what battle they are fighting. Listen to your body. You are not obligated to do everything a healthy person can. Dismiss the BS and focus on what is most important in your life. Live for you and stop doing things to please others.
Do not be closed off to life because you are not where you want to be right now…Healing comes with time. Honor both the storm and the rainbow. Take the good days with the bad ones and keep fighting. You are not alone.