Identity Crisis: Beyond Diagnosis

Growing up, I identified as a cook and an athlete. I went to culinary school, played field hockey, soccer, lacrosse, ran track and field and cross-country, and had a brief tennis phase. I considered myself a determined, career-oriented, and reliable individual. I had a good sense of humor and was always willing to go out of my way to help others. This was my core identity, but what happens when everything changes in a split second and your identity is tested?

I was confused and embarrassed that my body felt like it was giving up on me so suddenly.

In 2019, everything changed when I abruptly got sick and went from being a runner and working 40+ hours a week in a hospital as a dietetic intern to barely being able to get out of bed or eat. I was in and out of the ER, hospitalized, and had multiple–and expensive–ambulance rides. I was confused and embarrassed that my body felt like it was giving up on me so suddenly.

After seeing over 20 doctors and being told my symptoms were just anxiety, or that I was faking it, I ended up driving over 400 miles to see a specialist and was diagnosed with a chronic illness: Postural orthostatic tachycardia syndrome (POTS). Receiving a diagnosis was a bittersweet moment. To be validated by a doctor after seven months of being told I was faking my symptoms felt like such a relief–like I could finally restart my life again.

When people get diagnosed with a chronic illness, it’s common to view life as having two chapters: Before and After. This is my “After,” the story about the physical and emotional transition from getting diagnosed to searching for a new identity.

After my diagnosis, I knew life would never be the same again, but a small piece of me already knew that. My life was forever changed, and it felt like I was just supposed to go back to real life and be the same person I used to be. But I wasn’t. I felt like a shell of who I used to be. Having a sudden onset of symptoms and getting diagnosed with a chronic illness is a source of trauma, even though a lot of people don’t realize that. The reality of chronic illness is that we don’t go back to the person we used to be. I had so many questions and so many emotions, but so few answers. Would I still be able to have a career? Would my friends and family support me? Most importantly, what was my identity now?

I went through the stages of grief as I grieved my past life and paved the way into a new reality, embracing a new identity.

I realized my entire identity revolved around running, and it was the first question everyone asked when they saw me: “How far did you run today?” I went through trauma therapy called Eye Movement Desensitization Reprocessing (EMDR) to help me come to terms with the idea that I would likely never run again and would have to build a new identity. I went through the stages of grief as I grieved my past life and paved the way into a new reality, embracing a new identity.

After having so many doctors tell me I was faking my illness, I started to have panic attacks every time I stepped into a hospital or had a doctor’s appointment. My medical condition may not have been anxiety, but it definitely caused some. Through many years of therapy, and with time and good doctors, I got to a point where I could see new providers without panicking. I’ve also found support through chronic illness support groups, which have helped me find a good network of providers and feel less isolated.

With time and many doctors, I got to a point where I could work part-time and live independently, which was more than I could have imagined when I first got diagnosed. Through living with a chronic illness, I experienced personal growth that I didn’t ask for. It’s been a process of learning how to balance my social life, work, and energy without exhausting myself with one activity.

Over the years, I have learned how to prioritize the things that are most important.

Over the years, I have learned how to prioritize the things that are most important. I’ve also become my own advocate and pushed for the best doctors and treatment options while fighting insurance battles every step of the way. I have become resilient, patient, and a great problem solver, all while trying to stay optimistic.

Nobody wants to experience trauma, but we all have some source of trauma in our lives, and it’s all about how we handle it that matters the most. I have learned to utilize my skills and previous hobbies in other ways. I have been writing a cookbook for other patients with POTS, and since cooking takes a lot of energy, I pace myself when testing the recipes. Creating a cookbook started as a way to cope with chronic illness and decompress after doctor’s appointments, but it’s turned into one of my new hobbies.

Going back to work at a hospital with a chronic illness gave me a new sense of empathy and understanding for what patients go through. They are dealing with so much behind the scenes that we don’t see. I hope my own medical conditions have helped me connect with patients who are dealing with their own medical complexities.

I used to think of having a chronic illness as living with limitations, but it’s really about living beyond the limitations and finding strength through trauma.

Alison King is a registered dietitian with a culinary degree and is from San Diego. In her free time, she enjoys spending time with friends, working on her cookbook, and playing board games.