KEEPING IT REAL: Living With CP During The Pandemic

People with cerebral palsy are experiencing additional challenges because of the pandemic.This is Tylia's take.

How Coronavirus Affects My Life as a Woman With Cerebral Palsy
By Tylia L. Flores

I have always been a social butterfly despite my cerebral palsy. I've enjoyed going out and exploring the world from my own point of view, but now with the coronavirus outbreak taking effect, it has affected my everyday life in more ways than you know.

For example, due to my cerebral palsy, I tend to suffer from anxiety, and I don't do well when things are out of the ordinary. With the coronavirus affecting the nation and being all over the media, it has caused me extreme anxiety and extreme stiffness throughout my whole entire body. I feel constantly on edge as to when things will go back to normal in my everyday routine. This feels too intense for me. Constantly seeing things on social media makes me cringe.

Although it may seem like a little less ideal for some people, for me it is because the future of my health care is uncertain. The future of going to visit my friends that are in group homes is uncertain. The future of me being able to go out in my community and enjoy activities like going to Disney World or Universal Studios is uncertain.

Just being able to go outside and have a margarita by the beach like a normal 24-year-old is uncertain for me right now. Due to this virus, I feel trapped inside the world.

Although we may have virtual things to keep us occupied, that can only last for so long. We need to be a part of everyday socialization in order to thrive — like going to physical therapy or doctor's appointments, and maybe even specialists.

These are all things that were in my mind as I think of the word coronavirus. My mind begins to shift and my body gets stiff and I wonder when will it end when will it stop. I can't be isolated from society. I understand safety precautions and keeping everyone safe, but you don't tend to think about the things you take for granted until they’re taken away from you until you can't do it anymore.

It's bad enough sometimes having CP could be difficult because we're limited to the things we could do, but now we're being told even if we could do it, we can't.

That's a hard pill for me to swallow as someone who is a socialite and likes meeting new people, but I hope that all this dies down and we can go back to our everyday lives.

* Tylia’s story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.