The Unexpected Losses and Gains of Lyme Disease


I knew chronic illness was going to alter the course of my life. I knew I would have to go to countless doctors to find out what’s wrong with me only to hear, “There’s nothing wrong with you,” and end up feeling like a frustrated fool. I knew I would have an at home pharmacy that would rival the drug store’s nearby. I knew there would be many days I would not even be able to leave the house and showering would seem like the ultimate feat to accomplish. The one thing no one told me is one of the saddest changes of all, losing friends.

Over the course of the last year and a half, I have lost the majority of my friends. It started with having to cancel on several dinner and get-togethers because I was too dizzy to drive or in too much pain to walk. After a little while, I stopped making plans because I had to cancel so many times. When I was feeling so horrible, the last thing I wanted to do was even talk on the phone, so that fell by the wayside too. Before I knew it, I was living in a tiny, lonely bubble feeling like a shell of my former self.

Chronic illnesses, in my case chronic Lyme disease and Babesia, are not the flowers and casseroles type of diseases. No one came by to drop off dinner because I was too sick to cook, or dropped off flowers to brighten my day. No one sent me get well cards. No one even came by really much at all. This is not a sob story because I didn’t need all of those things, but this type of illness is just different. When my former rheumatologist inferred that “it was all in my head” and that I was acting sick for attention, I thought, “Why would I do that?” The pain and symptoms were real but I was getting no extra attention, so what would I have had to gain?

Some friends completely stopped reaching out and it felt like they didn’t care. It was, and still is, extremely hurtful and hard to think about. I don’t put the blame on anyone else but that does not lessen the hurt. However, with all the loss and sadness, also came newfound realizations. I found out who my true friends were. I found out who kept reaching out to me even after I started to close myself off. The friends that texted me everyday knowing talking on the phone was too exhausting. The friends who drove four hours to see me because I couldn’t make the drive to see them as I had planned. The friends who were emailing articles they had found about treatments that could possible help me. The friends who cared and let me know at a time I really just needed support.

All of these feelings are flowing back up as my birthday is approaching next week. For my 30th birthday, I had 50 friends come to a party for me in San Francisco and it was an amazing party that I will never forget. For my 33rd birthday next week, I have chosen not to plan anything. The wounds of the loss are still fresh and I have no desire to invite anyone to a get together. I’m sure I will eat a favorite meal with my family and they will make it special. I will spend time with those closest to me who remained at my side, which is what I need right now.

I have been struggling the past couple weeks with all this hurt, but then I am reminded of the people in my life who have surprised me in awesome ways, and I am thankful. I’m thankful for a new, beautiful friend at my Weight Watchers meeting that brought me early birthday flowers on Tuesday. She obviously pays great attention and brought me a gorgeous bouquet. Along with them she shared insightful, kind words about my success in pushing through Lyme and working on moving towards better health. It was one of the most thoughtful things people has done for me and nearly brought me to tears. It was just what my heart needed – a reminder that people do in fact care.

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