I’ve spent time thinking about how I want to share this story. I’ve avoided doing it for sometime, and I have thought about the pros and cons of sharing all of my details. The majority of people who would read this are friends, colleagues, and recruiters checking out my website, and learning from what I did to get well wouldn’t be directly applicable. Plus, everyone who heals from Lyme disease, tick borne illnesses, toxic mold exposure, and mast cell activation syndrome truly goes through an individual endeavor to get well where a “one size fits all” solution doesn’t exist.
I think there’s a public perception of not really understanding what Lyme disease does, but most know that it won’t physically kill you.
What I want to share is perhaps that healing from Lyme and MCAS is not so much a physical struggle as it is a mental struggle. It is the hardest thing I’ve ever done, and the truth is not everyone survives. I thought I was way over my limit my senior year of college when I got sick. The years that followed put me so far over what I thought was my limit. I learned that a lot of days it is just about surviving and making it through the day, and overall that surviving this illness is the true test. It was devastating to give up my career as a young adult for years, but if I had tried to keep it, as some might have, I’m not sure I would have made it through. If I had not found my way into cycling, my only source of joy at times, I don’t think I would have made it out either.
Being sick with MCAS is very isolating, and I avoided others from leaving impressions of myself when I was at my most ill. The isolation from others going through similar stuff leaves a lack of validation for what you’re going through. The only source to combat this is online, and what others share of their unfortunate realities is eye opening and validating. I’ve read Reddit posts about people considering suicide or how people have died of malnourishment due to reacting to too many foods. What struck me the most of these realities was the passing of Beth O’Hara, a MCAS doctor and pioneer who started her own practice helping others with the illness she had to treat herself through. There are different levels of treatment required to get through Lyme, and if you are a more sensitive patient (I was a very sensitive patient), you have to do more things to get well. I’m talking resetting your nervous system and doing the Dynamic Neural Retraining System. Going to a biological dentist to clean out your infected wisdom teeth sockets from when you got them out in high school. Avoiding mold at all costs. Avoiding salicylates in addition to histamine. Doing therapy. Cutting toxic people out of your life. Uncovering your past traumas and healing from them.
My perception of Beth is that she was was one of the most sensitive of all, and that she basically had to do every single thing to get well. She started Mast Cell 360 to share what she learned. She was a hero to many, and yet she took her own life in 2023, after seemingly conquering most of her illness. I think many people in this community struggle with her death as I do.
Sometimes I take for granted where I am now. It feels like, was that really my reality? I can do things now, I am able. It feels natural and innate. It’s hard to fathom that I couldn’t do the basic things I do now a few years ago or could be the places I now live.