Blog, The Lyme Survival Guide

If my illness is the ocean, therapy is my surfboard

For most of my life I’ve been a people pleaser and an over-achiever. I wrapped my self worth up in that. But then I got sick, and suddenly something else was in control. My will power had lost its power.

I started losing my abilities. At my job I could usually count on myself to deliver work I was proud of, even if it required me to pull all-nighters, but as I got sicker I started losing the ability to control my body. My energy started to weaken and my cognitive functioning went haywire. I used to be so active, I’d wake up everyday at 5am, go to the gym, then walk to work and have energy for the entire day. But gradually I became so weak I’d be out of breath just from the morning routine of getting ready for work, and would start the workday in pain and weakness. Some days I couldn’t understand what I was reading, other days I couldn’t understand what people were saying, and I was having more and more awkward presentations because I couldn’t get the words to come out of my mouth.

My confidence in my intelligence started to erode as I became confused more easily, and overwhelmed by even simple design projects. I used to feel like I could tackle anything if I put my mind to it, but my mind was becoming unpredictable in ways I’d never experienced before. When I had to leave my job that I loved and my career that I was so proud of, I was so scared. What was happening to me? Would I ever be “myself” again? Was I becoming a complete loser who would never be able to live independently again?  

It wasn’t just losing my abilities that was so upsetting, it was the entire experience of being sick and having to completely redefine myself and my self worth. I had put so much of my self worth into my career, and my achievements in that career, so the loss of my ability to work meant that I lost a huge chunk of my self worth.

Lyme doesn’t just infect your body, it also infects your mind, your spirit, and your self worth. 

Since I was 5 years old I have always been a performer. Singing and dancing on stage was my greatest source of happiness and my biggest hobby. I love being a part of a cast and making friends with them, going to rehearsals in small dance studios, learning new songs, choreographing performances, taking dance lessons and learning new ways to move my body. I love the energy of performances, the excited nervousness before the show, making audiences laugh and applaud, signing autographs, and the feeling of pride when it’s over. It made me feel so special. But Lyme very quickly started taking that away from me.

I wasn’t physically able to show up to every rehearsal, I was forgetting lyrics during performances, and a new type of performance anxiety started to creep in. When my weakness and back pain took over, I could no longer dance, but I could at least sing. So I left the stage and took up singing projects for musicians who needed a female singer. I joined The Blind Cafe which was a unique experience for me to be able to sing even while physically sick, because I could sing into a microphone while laying on a mattress in complete darkness. But then the air hunger from my Babesia co-infection started taking my breath away from me, making it difficult to sing at all. When I lost my biggest hobby, and my biggest source of happiness, I lost another giant part of my self worth. 

With no job, and no hobby, I felt completely empty, like I was just disappearing from society and felt so much shame about my inabilities. I hated this new version of me that couldn’t work anymore, that couldn’t perform anymore, that couldn’t do most of the things I had loved and that others loved about me. My self worth bottomed out, and I realized that I needed to add a therapist to my medical team to help me figure out how to live in this new type of life I was in.

From the very beginning my therapist began teaching me the concept of “being vs doing.” Being vs. doing is a belief that we are not valuable only because of what we do; that simply being who we are is where our true source of self worth should come from, but that is so completely opposite of how most of us live our lives, and how society celebrates worth. For the chronically ill, it’s such an important level of self-compassion to achieve, because the opposite is awful and can become dangerous. The opposite means that if you suddenly become disabled, and are no longer able to DO the things that everyone values, then by society’s standards you no longer have self worth, so what’s the value of living at all? 

That is a horrible way to think about yourself. Especially when it’s because of a chronic illness that is out of your control. But it explains some of the reasons why suicide risk goes up significantly with people who have a chronic illness.

Like one woman who suffers from a chronic illness wrote in The Mighty:

Living with a chronic illness is one of the hardest, most harrowing experiences anyone will have to go through. Living with pain every single second and other debilitating and humiliating symptoms causes a type of stress and anguish that is unlike anything else.

Learning to accept my current limitations and be self-compassionate during my illness has been the most rewarding work I’ve done in therapy. In the beginning it was really difficult for me to get there, but over the last 2 years it’s gotten a lot easier. There are times when I go to therapy 1-2 times a month, then there are particularly difficult times when I go every week. During the hardest struggles I’ve gone as often as twice a week, sometimes even texting between sessions. Being chronically ill is a tumultuous mental battlefield, and having a therapist to share that burden with can make things a lot easier on you emotionally. Because stress and depression can have such a negative impact on your physical health, it is vital to your treatment to work on your emotional health, which is why therapy will always be part of my Lyme treatment plan. 

I still struggle daily with frustration, and thoughts that I should be doing more with my illness, and I allow those thoughts in because they can be good motivators (like pushing me to write this blog post), but I fight against letting them turn to shame or guilt, or to compare how I handle my illness with how someone else handles theirs. Because it’s not a competition, there is no “perfect” sick person, and believing I should be perfect or over-achieving means that I am assuming control over an illness and symptoms I have no control over. Self-compassion allows you to just BE sick, to be proud of yourself for what you are doing, to be kind to yourself for what you’re not doing, and to give yourself the peace that comes when you are able to accept your limitations. If your illness is like the ocean, therapy can act like a surfboard, helping you to ride your illness like a wave, rather than trying to fight against it until you tire yourself out and drown in the depression, guilt, and shame. ❤

And on that note… 🙂

Video of dogs surfing at the Huntington Beach Dog Surfing Competition! 🙂

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