When I was eleven, my father was diagnosed with Parkinson’s disease. For those who are unaware, Parkinson’s disease is a chronic, neurologically degenerative disease in which the person experiencing it has a severe lack of the neurotransmitter dopamine. This lack of dopamine primarily results in changes in movement. Most people associate Parkinson’s disease with Michael J. Fox and hand tremors, but it is so much more than that.
Having a family member, especially a parent, become diagnosed with a chronic illness, has impacted my life in so many ways, and I feel that family members of people who are ill are overlooked. While my experiences are not representative of everyone in my position, here are some things that I have observed about having a family member with a chronic illness:
The Family Dynamic Changes
While my father will always be my father, his Parkinson’s disease has absolutely changed the workings of my family. My mom has to balance work and caring for someone who is not truly independent, and I have witnessed her endure ridiculous amounts of stress and pressure. My brothers and I have all been caretakers for my father. At times, the roles have switched, and I have had to offer care and support to my father while putting my own needs aside. Often, family plans rely upon when my father is feeling well enough to leave the house, and our schedule revolves around his health.
The Illness Becomes Part of the Family
As much as you do not want it to, the illness will consume part of your life. The illness is the undercurrent of every family interaction and every interaction I have with someone who cares about my father. Life quickly becomes centered around doctor’s appointments and when the next time is that my father needs to take his medication. More time and energy is put into caring for your diagnosed family member than you could have ever imagined.
People Have No Idea How to Deal with It
Friends, acquaintances, neighbors, and extended family members mean the best. They really do, but they have no idea of how to react when they learn that my father has Parkinson’s disease, or when my mother and I have the candor to say that he isn’t doing well when people ask about his health. Most people feel the need to apologize and offer their condolences, and while I appreciate the sympathy, they do not need to feel bad or guilty.
However, I do not appreciate it when people outside of my immediate family question how severe my father’s condition is. Just because he seemed mobile and healthy one day does not mean that he will be like that next week, or even tomorrow. Just because he started a medication or treatment that was successful for someone else you know does not mean that he will magically become better again. It is hurtful and insulting when people assume they know more about how my father doing just because they saw him briefly awhile ago.
It Affects You More than You Think It Will
When my father was first diagnosed, I did not imagine that this illness would affect my family or me in any way. After all, we were so happy. However, illness, even if it isn't yours, impacts nearly every aspect of your life, it is only natural that you will change too. I am more empathetic to the suffering of others, am more defensive of people’s family situations, am wary to seem too emotional about my family in front of other people, and have become envious of people with seemingly ‘normal’ families. I am always filled with a wistfulness and more than an inkling of resentment when people complain about their healthy, entirely functional families.
You Become An Expert in Whatever Illness Your Family Member Has
I have become an unofficial expert on Parkinson’s disease. Every new treatment or medication that my father has ever tried has ensued a Google search and lots of research. I now know the symptoms of Parkinson’s disease (typical and atypical), the great debate on how it is caused, the types of medications and the risks associated with multiple treatments, and tons of other issues that accompany the diagnosis.
To anyone reading this article who has a sick family member, my heart goes out to you. What you deal with every day is not easy, and it is totally fine sometimes to admit that not everything is okay. You have to be strong so much of the time, and I promise that life will be okay if you take care of yourself and your own needs sometimes. I believe in you, and you are such an amazing person.
