How identity can evolve after a Parkinson’s diagnosis
The changes can be difficult, but they also bring opportunities
Have you ever pondered the question “Who am I?” Personally, I never have. This won’t surprise anyone who knows me, as I’m not the type of person who self-reflects. But I recently started thinking about it as I began researching how identity can change after a Parkinson’s diagnosis.
Our identity starts to take form as soon as we are born. It’s initially influenced by many factors outside of our control, such as our gender, race, physical characteristics, place of birth, and socioeconomic status. As we mature, we learn values and beliefs from our family and community, and later make essential choices regarding education, career path, marriage, and children — all of which shapes who we are.
Some aspects of our identity may feel like an uncomfortable label on our shirt that we can’t seem to get rid of entirely. We can cut off the itchy label, but there’s still that tiny piece of rough fabric that we can’t remove, no matter how hard we try.
Embracing our new identity
So how does a diagnosis of early-onset Parkinson’s disease affect one’s identity? In our family, the disease has not only affected the identity of my husband, Arman, who was diagnosed in 2009 at age 38, but also the identity of our entire family unit.
Before his diagnosis, Arman’s identity was shaped by his emerging career as a successful cardiologist, his dedication to his family, his passion for medical knowledge, and his commitment to physical fitness through weightlifting and running. He was intensely strong, both emotionally and physically, and viewed asking for help as a weakness.
Post-diagnosis, he faced career loss and the inability to maintain his intense exercise regimen. He was forced to start asking for help. The abrupt change in many of the factors that made him Arman must have been gut-wrenching for him. But he never complained or felt sorry for himself, and took it all with a smile and sense of humor. Handfuls of medicine went down his throat daily, but he never uttered a word of negativity. Now that is what I call true strength.
Having a father with a disability has now been ingrained into our children’s identity. As I’ve mentioned in previous columns, they have grown up to be kind, caring, patient, and empathetic adults, and I attribute much of this to living with Parkinson’s disease.
As Arman’s wife, my identity has slowly evolved into that of a caregiver. I also changed my career path so I’d be available to assist Arman in all aspects of his life. While this isn’t the future I expected, I wouldn’t change it for anything. Besides being a mother, the most tremendous honor in my life is caring for my husband and supporting him through every aspect of his journey with Parkinson’s disease.
While our identity typically evolves throughout our life, the addition of a chronic illness can derail the path completely. Being thrust into an unexpected reality on an unknown journey can feel scary and overwhelming. After a diagnosis, our only real choice is to embrace our new identity and seek out ways to be positive about it. For me, this meant looking for opportunities to make a difference, and enmeshing that into my new identity.
Following are several ways to harness your new identity and make a difference:
- Advocate for others diagnosed with Parkinson’s disease.
- Educate yourself and become an expert on your or your loved one’s version of Parkinson’s.
- Educate friends, family, and the world about Parkinson’s.
- Fundraise for Parkinson’s research or charities.
- Volunteer at a charity or event dedicated to Parkinson’s disease.
- Attend or start a support group and become an active participant.
Has a Parkinson’s diagnosis affected your identity? Please share in the comments below.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Marilyn Swinehart
Although my husband was diagnosed in his late 70's, I gained a lot from your article. We have both needed to change our identities and our outlook on life. Thank you!!!
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Jamie Askari
Hi Marilyn! I am really glad to hear that you learned from my writing, thank you for reading!
Colleen King
I was an intensive care nurse and accustomed to caring and helping. It has been very difficult asking for help from others. I have also developed a great sense of gratitude to my husband who is helping me. I don't like my inward focus as I learn about PD. It has taken over our lives. I have to exercise every evening with a group on zoom. My life is wound around getting my meds on time, every 3 hours! I have to sit up later at night than I used to so that I can tqke my final dose for the day. I feel very selfish about taking over our lives to accommodate PD I also do not like the way I look for my grand daughters( I had cancer, a mastectomy and chemotherapy) I have lost my hair and do not look like the grandmother I expected to be. I resent being too weak to enjoy the beach and seaside with my grand daughters when they visited me from Canada. I do not feel like the competent person I was.
Jamie Askari
HI Colleen, thank you for reading. My husband was a critical care cardiologist, so I believe he has many of the same feelings. It does feel like our work revolves around PD in our home too. I have feeling that your grand daughters love you just the way you are. Give yourself a break, you are dealing with a lot. Stay strong Colleen ;)