Identity Crisis After Diagnosis

Our identity is what makes each of us unique. Whether it’s our outward appearance, personality, or even our last names, one’s identity is what makes us who we are as a person. Experiences can affect our identity as well. After a huge event, such as receiving a life-changing diagnosis, we may begin to ask ourselves, “Is this who I am now?” I know I felt this way after receiving my non-radiographic axial spondyloarthritis (nr-AxSpA) diagnosis back in May 2019.

It's about embracing the new normal

Shortly after my diagnosis, I remember asking a colleague of mine who has her own chronic illnesses when I might feel normal after starting my new biologic. She told me that I’ll never truly be normal again because that person no longer exists, and went on to say, “It’s about embracing the new normal.” It was incredibly difficult to grasp the idea of the person I was prior to even my first hip surgery in 2017 didn’t exist anymore. I had wished for that pain-free person I was back in 2003 to come back.

I felt both grief and relief

Since the age of nineteen, I didn’t always want to be known as a chronic pain patient. On one hand, I felt the relief of not having to search for the unknown puzzle piece that ended up being nr-AxSpA, but on the other hand, I felt something I didn’t expect: grief for the person I used to be. The person who loved playing softball and volleyball and not knowing if I could ever play again. I grieved over the person who didn’t have to suffer from pain every single day. I grieved over the realization my husband who I’ve been with for over thirteen years has never known me without chronic back pain.

I'm constantly reminded of this disease

Prior to my diagnosis, I was depressed and exhausted over my many years of jumping from specialist to specialist in efforts to figure out what was going on with me. Despite acknowledging it as a daily part of my life, I didn’t want to be defined by my diagnosis. Whether it’s the back pain, the hip pain, or the fatigue, I am constantly reminded of this disease.

My therapist helped me come to terms

Since my adolescence, I have been seeing my psychotherapist for about twenty-five years. With her guidance, I was able to come to terms with this “identity crisis” I was having. There have been moments in time since my first hip surgery back in April 2017 when I felt like I was veering back towards depression, especially when I wanted my body to work or heal better. She helped me move forward by setting goals for myself and focusing on my health, which in turn helped me with my self-worth.

I'm me

While I still long to be that person I was, I now feel a strength inside me that wasn’t as evident as before. I am constantly testing the waters to see what my best new normal can be. I am accepting I will have moments of feeling almost pain-free that will inevitably usher in the next wave of pain. The one key difference between the old me and the current me? I have never been so focused on strengthening my body. The beauty is each of us are always evolving and never stagnant. I know who I am: I’m me.