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How I learned self-love managing my chronic illness

February 24, 2020

To learn that you have a heart condition on Valentine’s Day is a uniquely odd experience. My heart had a defect and my life changed, for better and for worse. It was decidedly ironic, and as many health diagnoses can feel, it was upsetting. 

On February 14, 2019, I was diagnosed with a heart condition called Postural Orthostatic Tachycardia Syndrome (POTS). This news came after two years of medical struggles and multiple misdiagnoses. In 2017, my doctor told me I needed to see a cardiologist. I had been in and out of eating disorder treatment for two years, recovering from restrictive type anorexia. I worried I’d never get better.

My past struggle with an eating disorder was, in part, a result of my gender dysphoria. I was so incredibly distressed by my body, the incongruence of my gender identity and the way my body looked, that I developed an eating disorder as a coping mechanism. It felt like a way to gain back control, but it was extremely harmful and came at a much bigger cost than I could have ever anticipated. 

POTS can cause black outs, fainting spells, and weakness, gastrointestinal issues, dizziness, chronic fatigue, and a laundry list of other symptoms. Once I received this diagnosis, I had a hard time accepting my body’s limits. I wanted to drink caffeine and take the stairs as frequently as I had before. I wanted to work out with my friends and be their gym buddy. I wanted to walk everywhere and stand up normally. I had no other option but to accept where my body was at. And while in treatment, I was taught the incredible importance of recovery, as well as the importance of self care. 

It took a lot of learning and a lot of time to accept my body’s changes. I gradually cut down on caffeine, managed to take my medication as prescribed, and entered a stable recovery from my eating disorder. This took the better part of a year, and I still struggle. For me, self-care needed to come from a place of self-love. It was time to dismantle the internalized transphobia and ableism I experienced. I confronted my biases and prejudices in order to better understand where my identities came from. I learned to accept my non-binary body. I don’t fit within the binaries of male and female, healthy and sick. I don’t fit into the boxes that society would like me to. And that’s okay. 

Self-care continued to be a battle after I left treatment. I didn’t know how to implement it when I was so unsure and unsteady, but I eventually learned through practice and experience. I started following social media accounts that promoted recovery (such as @i_weigh), and implemented a structure in my day that would put recovery first. I advocated for myself in the ways in which I needed to. 

Part of my self-love journey has been staying in weekly therapy. I continue to work on myself so that I can better handle the life changes that come with chronic illness. Another part of it has been radical self-care. Being selfish when I need to be, setting limits, setting boundaries. I also call myself out when I need to. Holding myself accountable for the slips and the mess-ups. 

Self-care is more than face masks and bubble baths. It’s messy, it’s uncomfortable. Sometimes it’s taking naps and not getting enough school work done because that’s what my body needs. Sometimes it’s not going out with my friends. Sometimes it’s missing out. And that sucks. But listening to my body has been the most liberating thing I could have ever done. 

A big component of this journey to self-love after my diagnosis on February 14, 2019 was listening to my body instead of my brain. They are certainly connected, but sometimes my thoughts and feelings don’t match the situation at hand. For example, if my brain says I need to exercise for more than thirty minutes, I might respond with “I will do what my body can handle and no more”. 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

A post shared by Julian Van Horne (@thedisabledhippie) on

This is by no means a perfect process. This is by no means an easy process. Accepting new limits is never easy. It is complicated and nuanced and perfectly imperfect. It is a journey to progress, because no body is ever perfect. 

Self-love is not a linear process either. It is just as messy as anything else. For me, it was equal parts body positive and disability justice work. It was finding queer and disabled role models like Julian Van Horne (@thedisabledhippe) and Mia Mingus (@mia.mingus). It was finding my own space in between healthy and sick. Because chronic illness might define me as sick, but I don’t have to identify with it. And I can love myself despite any hardship. Despite any disability, or limit, or slip up. Because that’s what self-love is. Loving yourself no matter what stage of relapse or recovery. Loving yourself because you intrinsically have worth. You have every reason to believe you are full of light. 

Skylar Rungren is a GLAAD Campus Ambassador and junior at University of Vermont studying biomedical engineering. He is a non-binary, Jewish activist also studying Gender, Sexuality and Women's studies, and English.

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