When I first started having symptoms, I longed for a diagnosis. I thought that if I knew what was wrong, it would give me peace of mind. I was fortunate to get my POTS diagnosis within a few months of onset. Many people have to wait years for an accurate diagnosis, and I am grateful for a nurse practitioner that kept trying when I had an unusual set of symptoms. Knowing my illness has helped me to understand some of what is happening with my body. Still, there are some things that come with chronic illness that I couldn’t learn about through online medical research and education.
Most of my life, I’ve had a purpose that was easy to identify. When I was young, I was overly invested in my schoolwork. In college, I became passionate about social justice issues and mental health. I focused my studies on these issues so that I could live out my beliefs in those areas. Once I graduated from college, I spent my workday walking alongside people with severe mental illness. When someone asked me what was going on in my life, I could always talk about school or work. People usually want a short answer to the question, “What do you do?” and I’ve perfected my response over the years to a sentence or two.
And then came chronic illness. I don’t have a “typical day.” My activities usually depend on how I feel that day and if my body is willing to cooperate with my plans. If I have an elevated heart rate, it’s not realistic for me to leave home. Sometimes I cancel plans because I know that I cannot physically do what I’d hoped. One of the most difficult things for me has been leaving my job. I may be able to go back a few months from now, but I am unsure if that will be possible. I wasn’t able to wrap up things at work before taking my leave. I got really ill one day and left early. Since then, my doctors have advised me not to work. I love my job, and my co-workers are great people. I miss working with the patients I’d gotten to know so well. My first few weeks off work were spent thinking about the patients, asking myself, “How is she? Is he staying clean and sober? Will she succeed in meeting her goals?”. I miss the little moments when I saw progress. I even miss dealing with the behavioral issues with patients, because I knew I had an opportunity to help them grow. Leaving work felt like walking away from my purpose. As an adult, I have felt most alive and purpose-filled when I helped someone, and I got to do that every day at work.
Now I am the one who needs help and I feel powerless more often than I’d like to admit. And it feels natural to stay in the dark parts of my mind and feel sad. Learning to live with a chronic illness requires a grieving process. I am still working through my grief, but I have started to accept some of the changes in my life. It’s helped me to practice gratitude on a daily basis. Little by little, I am working toward living a full life. Today I made a list of things I can still do to bring joy to myself and others. It brought me some peace to write down a dozen things that I can always do. Here are a few of my favorites:
- wave at neighbors
- kiss my husband
- practice gratitude
- encourage a loved one
- write letters to pen pals
- watch good movies
I am learning to redefine my purpose. I may not have the clear-cut title of student or case manager, but I am still a friend, wife, daughter, and neighbor. And for now, I want that to be enough.