When I Fear Losing My Identity After Stopping Work Due to Disability

“Nice to meet you. What do you do?” That question is asked so many times in our society that it has caused us to identify ourselves by what we choose to do for employment. But what if you cannot work? How do you identify yourself?

This is a question I have been struggling with for a while now. I have been in the professional world for over 10 years, and I have worked at least part time since I was 15 years old. With a master’s degree, I planned to be a working professional until I retired. However, my disability appears to have other plans for me. Now I must come to terms with the fact that I may not be able to answer the question, “What do you do?” much longer. Who am I? What will I be then? Just another person with a disability? Is that what defines me now?

The disabled world has been a part of my life since birth. Not because of my own disability, but because of family members. I grew up with an uncle and two cousins with spinal muscular atrophy type II. I remember the many years of volunteering at the local MDA Telethon every Labor Day weekend. I visited the MDA camp every summer with my uncle as I got older, and met multiple friends. It is there where I met my future wheelchair basketball coach, who was also a counselor there. At age 16 I became a counselor at the MDA camp; unbeknownst to me, 15 years later I would be given a diagnosis of mitochondrial disease, a form of muscular dystrophy.

I began volunteering for a children’s recreational rehabilitation program teaching adaptive sports to kids with disabilities at age 15, and when I began showing symptoms of my own disability, I too began playing wheelchair basketball. After graduation I went to college for social work. Once I graduated, I began my career as a mental health case manager working with individuals with mental illness. I enjoyed that career for five years before transitioning to therapeutic foster care working with children with disabilities in the foster care system.

I then transitioned to my current position as a probation officer after obtaining my master’s degree in Forensic Psychology. Here, I work with individuals with disabilities on a daily basis. It is astounding how many individuals with disabilities are involved in the criminal justice system. The system that needs to be revamped, and it must begin with an in depth look at our treatment providers, but that is a different topic altogether. After five years of service with the probation department, I have finally come to the end of my ability to continue. This has been a very difficult decision for me to make.

I must admit, I have always had trouble with the idea of being unable to work. I have helped so many people apply for and obtain Social Security Disability, but I have always thought it was something I would never do for myself. To be honest, part of me almost felt as if I was better than that. I felt as if I had the education and training to overcome whatever obstacle would come my way, and I would never be the person who would say, “I’m on disability.”

Even as a social worker, I have my own biases about people who live their lives on social security. Maybe it’s because I have worked with some people that I have felt were using it as a cop out. I will admit I have thought, “Well if I can work, why can’t you? Surely you can’t be worse off than me.” Maybe it was my age, maybe it was my inexperience, or maybe it was my subconscious fear of my own limitations surrounding work. I have come to realize that I am no more qualified to determine how disabled someone else is than they are to determine how disabled I am. A person’s disabilities are their own struggles that nobody else can fully understand.

I worked until I could work no more, and then I worked some more. I was in denial, and I pushed myself to the point of exhaustion. Sick days became more frequent, productivity became slower, mistakes happened more frequently, and I was reaching my limit. More and more symptoms began arising,  and my symptoms were increasing in frequency and intensity. I had to make a decision, and that decision was I could no longer return to work. The paperwork for long-term disability was started. The application for SSDI began. I had become one of my former clients. What was happening to me? I was losing my sense of self. I was losing my purpose in life. Who was I now? How do I answer the question, “What do you do?”

I’ve come to understand that our society has placed value in the wrong place. We need to focus on the person, not what they do or what they can do. I have bought into the idea that my job defines me for many years. I have pushed through pain and suffering because of the fear of losing my identity if I am not working. I would be a failure. I would be giving in to my disability. I would be nobody. These are all thoughts I had, and sometimes they still pop up every now and then.

It took a lot of soul-searching and support from my husband to finally come to terms with the fact that listening to my body and understanding my limitations is not giving up. I lose no part of myself by not working, because my job does not define me. I am not my job, I am Me. I am a loving wife, I am caring, I am an animal lover, I am adventurous, I am funny, I am family-oriented. I am Me, and nothing can change that. My job and my disability are only parts of my life; they do not define me. Don’t let any single part of your life define you, just be you!