Ready to Rant: Being a Patient With Chronic Illness Is a Full-Time Job

A used to be adventurous gal who is reinventing herself…
I recently had to leave my full-time job and unwillingly fulfill the role of full-time patient — being a patient with chronic illness (in my case, multiple chronic illnesses) is a full-time job and it’s absolutely the worst job I’ve ever had.
During the past few months, more symptoms arose, and going to work became unmanageable. So, I had to make an incredibly difficult decision… I decided it would be best to take some time off to figure out what else was going on with my body and to take care of myself.
Taking time off made me realize that I was in no shape to be dependable enough for a traditional, full-time job. I wasn’t getting better and every day was unpredictable and full of pain.
Over the past several years I’ve made countless call-outs, requests for medical leave, and have been on short-term disability. Now, the one thing that I never wanted to happen actually happened — full disability.
While I’m waiting to be officially approved for disability (which is a stressful, lengthy process), I suppose I am technically unemployed. Though it’s not by choice.
No one actually wants to be a full-time patient.
When I was forced to take medical leave and ultimately leave my job, I cried every single day for a month. I still cry on my worst days. I not only long to be outside the confines of my own home, but I long to be working, to have a schedule, and to have a sense of purpose again.
My most recent sense of purpose was working with a group of learning support students — I loved being the aide of an amazing girl who lived with autism. Having been with them since they were in the fourth grade (they’re now the sixth grade), I became quite attached.
After years of working meaningless retail positions, for the past eight years, I made it my mission to find jobs that held meaning. I started out walking dogs, then I became an intern. Following my internship, I worked with a well-known animal welfare organization, a doggie daycare, and eventually ended up working with special needs students.
Working with animals in the shelter setting was my biggest passion in life, and it always will be.
Working in animal welfare soon became too physically and emotionally demanding for me. So, I was forced to find another job. Fortunately, I found working with kids to be just as rewarding, but in a different way.
Simply knowing that I was making a difference in another being’s life made me light up inside. It truly brought me joy… and to have all that disappear has brought me much heartache.
Although I try to not beat myself up for things that are out of my control, there are days where I feel like a complete loser. I would never say that to anyone else who deals with chronic illness or disease (or even think anything like that about another person), but when it comes to myself, I have ridiculously-high expectations.
When I’m passionate about something, I give it my absolute all.
This experience made me realize that all of my self-confidence came from jobs that made me feel happy. Now, I have to find a way to do that for myself while I struggle with being a full-time patient.
It’s difficult when you feel as though your entire life is on hold, only to deal with several things that are out of your control. I try not to compare myself to others (especially able-bodied individuals), but it’s hard not to long for the simple things that others tend to take for granted.
If I could be granted just one wish, it would be to wake up pain-free and able to return to my job and work one full week with no issues. But, I have to accept the fact that’s no longer my reality and for someone as driven and previously active as myself, it’s been a hard pill to swallow.
The one thing I’ve learned from all of this? As a full-time patient or person with a chronic illness, it’s important to watch your internal dialogue.
I now realize that I’ve been an absolute bully to myself, but I’m learning to make peace and working on rewiring my brain. Being sick has shown me how much I desperately need to love myself — the self that I thought I did love.
With that being said, I’ve decided that my sense of purpose is to be my own best friend and to continue to advocate for myself and others who suffer from chronic illnesses and disease.
Feature Image: Canva