You Are Not Your Symptoms

Trigger warning: this piece discusses themes of anxiety and eating disorders.

My boyfriend and I were discussing the merits of New York compared to our current home in Los Angeles. He said, “Do you think you’d like New York? There’s more hustle and bustle there, and you’re usually pretty tired.” 

My first instinct was to take offence, I thought, “How dare he imply I’m incapable of handling the hustle and bustle?! I can handle whatever I set my mind to!” But, there was nothing to take offence to. He was actually being thoughtful and merely checking if I would be okay with a busy environment because he’s right: I frequently experience fatigue. This realisation that my fatigue is something other people notice bothered me. Of course, he’s my partner and knows more about my chronic illness than our friends or acquaintances would. Then, the idea that anyone might see me as anything less than a go-hard go-getter felt painful.  

But, what actually hurts is the doubt I have every day in myself that maybe I’m no longer a hyper-motivated, go-hard, go-getter. And that I’m not as valuable of a person because I have chronic fatigue. For most of my life, I was praised for working myself into the ground. I always had multiple jobs, excelled at sports, and got As in school. Even when I was hospitalised several times as a teenager for an eating disorder, I worked from the hospital. This intense, maladaptive workaholism, reinforced by our American and global culture of praising productivity above all else, was my identity. And I was very much okay with that. 

In college, I began having trouble keeping up with my self-imposed, extremely unrealistic standards. I started falling asleep randomly during the day, sometimes waking up six or eight hours later. I would get dizzy, pass out, come to, and immediately vomit. And, I would sometimes be completely unable to focus in class or study; the information wasn’t sticking. Eventually, I was diagnosed with dysautonomia. 

According to the Cleveland Clinic, “Dysautonomia is a nervous system disorder that disrupts autonomic body processes. The term ‘autonomic’ means ‘self-governing,’ or the body system processes we don’t think about like blood pressure, body temperature, breathing, digestion, heart rate, sweating and much more.” While not uncommon, dysautonomia causes and treatments remain poorly understood. I’ve heard several viable theories about my own dysautonomia from doctors - maybe it was caused by c-PTSD and PTSD that put excessive stress on my nervous system during my development. Maybe it was caused by overzealous treatment of an eating disorder I received in the hospital as a teenager that left permanent damage. 

While my dysautonomia was caused by no fault of my own, I have a hard time not being angry with myself for having symptoms, especially chronic fatigue and brain fog, and therefore struggling to get as much done as I used to. I worry that I’m not the same go-getter I used to be and that because of that my inherent value to myself, others, and the world is less. 

However, I am not my symptoms. While I experience fatigue because of my dysautonomia, I, myself, am not fatigue. This goes for symptoms of any chronic or mental illness: fatigue from depression, inability to concentrate from ADHD, experiencing overwhelm from anxiety, exhaustion and brain fog from an eating disorder, etc, etc. These are symptoms of something you have, they are not who you are. 

While your symptoms might make ‘being productive’ or getting things done in the societal sense more challenging, they don’t diminish your inherent value. Our inherent value isn’t decided by a certain societal metric like how productive we are. Even if it were, that wouldn’t be a very good scale. We all have different strengths, abilities, access to resources, and levels of knowledge. There’s no mathematical formula to define innate human value. 

If you’re dealing with a symptom or symptoms that make aspects of life more challenging for you, that doesn’t make you any less valuable. Doing what you can, when you can to live a life based on what’s important to you is the best any of us can do; that ebbs and flows over time and looks different for all of us. Symptoms of conditions we have are not reasons to consider ourselves any less valuable or inferior.

What you have and what you experience is not who you are. You are not your symptoms. 

-Clare

Voices of Hope wants you to know that you do not have to do this alone. Click here to 'find help' - it's not weak to speak!

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