What Being Dynamically Disabled Means to Me
After 16 years of living with a dynamic disability, I am only just scraping the surface of learning what it means to me. Coping with pain is difficult for anyone, no matter the age, so when it came to chronic pain of course that was a challenge. But as a child, emotionally it didn’t impact me in those present moments. I didn’t really think about how others viewed me—-that was until I got older.
Remission forced me to revisit what being dynamically disabled means to me
I had spent eight years in remission. During that time I had begun to forget what it felt like to live in constant pain or needing to adapt to situations whilst living with that pain. I also hadn’t experienced anyone questioning the validity of my illness or the inconsistency of the state of it. Once I started flaring up again I had entered a whole new chapter of my journey with dynamic disability. I now had to learn how to cope while tending to my responsibilities, how to cope with the opinions of others and reassess what exactly it meant to be dynamically disabled, how it will impact my life, and working toward personal goals.
I’m still learning how to navigate through and cope with other people's opinions of “not looking sick”
I’ve only recently learned how much I have to build up a thick skin. There have been so many times that even those who I’ve considered very close to me question the validity of my symptoms or their inconsistency. Society has put the word “disabled” into such a tight box, and more often than not lack the open-mindedness to understand that being disabled doesn’t look one specific way. I’m learning the importance of educating those who are questioning this, rather than getting defensive and feeling victimized.
Remembering that I don’t have to justify when I choose to use my mobility aid
As important as it is to educate others to help advocate our conditions, it’s also important to remember that we shouldn’t have to defend ourselves or justify how we choose to cope. There are many individuals who live with dynamic disabilities who require using mobility aids depending on how they are feeling. I have used my wheelchair for bad pain days, but I have also used it for preventative measures to prevent future burn-out so I am able to save my spoons for other important tasks that day. Either way, I shouldn’t feel the need to justify why or how I am choosing to use my mobility aid.
What I wish healthy and able-bodied individuals could be more understanding of
The quality of my illness doesn’t change just because I look “better” to the naked eye, or because I decided to put effort into my appearance that day. The only thing that changes is how I choose to show up which can fluctuate depending on my energy levels or level of frustration. Whether I’m dressed to the nines or wearing sweats in bed and on my fifth day of not showering, I am still ill and still struggling. I am allowed to choose how I spend my energy or where I put effort. I owe it to myself after years of living with illness to change my mind or change how I want to cope, just as everyone else on this planet is entitled to do so.
Have you taken our Person Before Patient Survey?