Sense Of Self

Written By: Nikita McCauley

Lyme disease can be very insidious, sneaking its way into places, thoughts, and memories where it shouldn’t be, making it a daily struggle to find the line between your sense of self and your illness. Sometimes I look back at moments from my life and I cant help but question `whether or not Lyme played a role in them. I question if my identity evolved and grew organically, or if those changes can be attributed to a bacteria existing outside of my control effecting my moods, personality, and health. At this point in my life it’s hard for me to actually remember what it felt like to be healthy, but I can picture it. I see snapshots of myself full of action, moving through life with an electricity I can’t quite grasp anymore. I see a little girl swinging from trees, a slightly older version dancing ballet or riding horses, I see myself at 13, a girl full of ideas, just starting to glimpse the real world. As clearly as I can picture these images of health, I still can’t feel that feeling. It’s taken me a long time to come to terms with that, and to be able to forgive myself, and my body for not being able to feel it. 

When I was young I existed in harmony with my body, my sense of self and my physical self were growing and evolving together. I saw myself as powerful, limitless and intelligent. But as I grew older and slowly sicker my sense of self changed. I know now that I have been living with chronic Lyme since I was 13, but like a lot of people I went relatively symptom free until I had a bad flare at 17. It’s easy to look back before then and pick out all the times I was experiencing symptoms, but just didn’t know it. Like how I got sick more often than normal, or how I seemed to always be more tired than a 13-16 year old should be. The fatigue in particular is what stands out to me. I can so clearly remember having a conversation with a friend of mine and her asking me how I was, I responded saying “I’m tired but good” after which she looked at me and said “you’re always tired Nikita.” This interaction meant nothing to me at the time, but now stands out as such an obvious sign; it makes me want to scream at my past self to wake up! Hindsight is full of cruel humor like that. 

Despite these symptoms, I never truly registered what was happening, I just felt scared and confused as my body began to grow weaker and weaker. That period of not knowing, of feeling the sharpness and activeness leave my mind and body was one of the hardest. I viewed myself as a failure, I failed to keep up with my peers, and I failed to succeed at being the powerful intellectual woman I always wanted to be. These feelings were fed by that not knowing, from not having a concrete reason for what I perceived as my own personal shortcomings. The uncertainty is one of the hardest and scariest aspects of illness to navigate, so finally getting my diagnosis at 19 was almost like a breath of fresh air, I could finally put a name to what I was going through. I am now almost two years into treatment, and while it can be unbelievably hard, (I had to drop out of school and move back home) I have gained some perspective. Mainly, it is vital to treat everyone, including yourself, with compassion. 

The harsh reality of Lyme, what makes it so hard to experience and also for others to understand, is that it is always present, my body experiences pain on a daily basis. But in a lot of ways it is an invisible pain, I very rarely look or act “sick.” People see my size two body and they see something desirable, not thinness brought about from constant nausea, likewise they see my short hair as a choice, not because it falls out on a regular basis and keeping it short makes that less noticeable. I don’t blame them for this, as a society it is extremely hard for us to accept illnesses that are invisible as well as chronic, be it depression, anxiety, auto immune, Lyme, or the plethora of other illnesses people experience everyday. I can’t count the amount of times people have asked me “but why aren’t you better yet?” which closely echoes the “why cant you just be happy” comment people with depression experience. I used to get frustrated by comments like these, why would someone say something like that? Don’t they know that I might never get better? But that’s the thing, they don’t know that. Even for people who know about my illness, there is absolutely no way for them to fully know what it feels like to exist in a body always in pain. This is why compassion is so important, both for maintaining my sense of self, but also for spreading awareness. Throughout this process I’ve realized that I can’t expect compassion from others unless I am willing to be vulnerable. I have gotten so good at projecting an image of health to my friends and family (one that I use in order to gain some normalcy in my relationships and experiences) that sometimes they forget that I can’t go through life the same way they do. I find myself upset that they don’t always take into account my symptoms, or that they don’t take my illness seriously. But this is completely and utterly unfair of me, I have to be my own advocate, I have to be honest with them about what I am going through and how that affects me. 

Similarly, I have to be honest and vulnerable with myself in order to treat myself with compassion. like I said earlier, Lyme can be very insidious, and it takes a lot of work to not view myself as a failure, to not let negative thoughts and judgments creep into every crevice of my life. There have been periods where I cried myself to sleep for months because I had an overwhelming sense of personal failure, anxiety, and depression about my lack of strength, activeness, and momentum through life. This still happens sometimes, I have by no means conquered my illness or the way it affects my self-esteem. But I have come to know the importance of being honest with myself about what I am capable of, what I truly want out of life, and what actions have a positive impact on my health and my self worth. We as people need to stop with this idea that being vulnerable is a sign of weakness. Instead we need to recognize it for what it is, a necessary part of life that encourages compassion and understanding. Everyone moves through life differently, and at different speeds. We can’t all assume that people understand what it feels like to experience something from our individual point of view, and we certainly cant assume that we know what it feels like to be in someone else’s shoes. 

My goal in sharing my experience is not to say that I have somehow over come my illness and that I alone hold all the answers, or even to say that I can speak to the experiences of everyone who is ill with Lyme. What I want to share is that we can each do our part to treat one another better, to be more self aware, and to remember that vulnerability and compassion are things to aspire to.  I will never swing through life with the same carefree vitality my six-year-old self did, nor will I be able to believe in the same feelings of uncomplicated, infinite health that I did at thirteen. My experience with illness has changed that perception, and I will never be able to exist in those childhood beliefs again, they will remain snapshots to me. Instead, I will try my best to live my life with authenticity, vulnerability, and compassion. 

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