When Chronic Illness is a Full Time Job

After I becoming sick and getting diagnosed with CVID, my world was turned upside down. I suddenly had a never-ending to do list and anxiety that haunted me. I needed to learn how to give myself infusions, find a good doctor near my university, miss classes to go to appointments, submit excuses for events in my sorority, and more. I knew I was sick, but I was not prepared for the storm that was coming.

When talking to my best friends about it I would always say, “Having CVID feels like a full time job. On top of my part time job and being a full-time college student and all of life’s other responsibilities.”

I would always make myself feel bad, like I was complaining too much. But, sometimes you just need to complain a little. I don’t ever want to lead a negative life, but I want to allow myself to feel all of my emotions and know that they are valid.

Managing this illness was so much harder than I imagined, especially as more and more health complications arose. I was driving over an hour each way to see my doctors, so I knew I would have to miss class or work. As college went on, I needed work experience and a internship in order to get a good “big girl job” one day.

And then there was this facade that I would keep up… like everything was fine, I was just this fun, bubbly college girl who loved to go out with her friends! Which – I am a very social person – but I realized more and more that I wasn’t really sharing about who I was and what I was going through. I displayed this certain version of myself that I thought was likeable and easy to deal with. Since I didn’t look sick, I was just like everyone else.

But, when I put this version of myself out there, it made it harder and harder to explain my situation while missing work, school, things in my sorority, or social events. I felt like I was always overexplaining or trying to figure out how to convey that this is a very serious illness.

Juggling it all can be very hard. And sometimes you feel like you are letting people down because you have this condition that takes away so much time and energy.

Having endless procedures, infusions, and surgeries while in this era of my life was so extremely difficult. I sat and wondered if I would ever get married one day, have kids, or have a normal career. I didn’t think that anything good in life was meant to be mine.

However – I was very wrong. While a chronic illness can totally be a full-time job, it is also possible to balance it with the life that you want. No one said it was going to be easy, but I am going to make it work as hard as I can. And I am going to surround myself with people who help me, understand me, and help me reach my goals!

I now have my first full time job, I moved to a new city, I’m making new friends, and I am in a relationship with someone who sticks by my side through the storm. This chronic illness isn’t going away anytime soon. It’s always going to take a lot of my time and energy. I will always give myself grace when I know that I need to rest. And I will always chase my dreams and know that this isn’t stopping me – whatever I want, I’m going to chase after it!!

More from Aubrey Grace

You Deserve to Treat Yourself: 3 Products I Love as a Chronically Ill Person

Living with CVID: How chronic illness changed my outlook on life.