The Struggles of Working with Endo

I’ve been on disability for a year now, after applying for 3 long and exhausting years. Throughout that time, I’ve lived with constant disappointment in myself, feeling as if I wasn’t "trying hard enough". Living with the frustration of feeling like I had lost my independence weighted heavy on me. Recently, I tried to go back to a “normal” day job, in hopes that working part-time was now an option. I wanted to share about the ups and downs of that experience, and why it only lasted a short period of time. And, mostly importantly, why that is okay.

Looking for part-time work

I chose to attempt to go back to work because I’ve gone almost a year without surgery. That hasn’t happened in 4 years, so I can definitely say I’ve been doing better. With my endometriosis and fibromyalgia diagnoses, I'm still in pain 24/7. I applied for a part-time position at a health food store and was beyond excited when I got an interview. Being considered for a job made me feel unstoppable. When they hired me on the spot, I was ecstatic. I had experienced so much pain through the years, times when I thought I’d never be able to even go outside each day. I couldn't wait to start.

I was happy, for a few weeks...

Waking up knowing I had work felt good, which I know a lot of people rarely say. But for the first time in years, I felt I had a sense of purpose for the day. I could feel my independence coming back, even after only a few days. It was so nice to work around people, to feel social, and almost forget for a brief time that I was a disabled person. But by the middle of the shift, my pelvis and hip bones felt like they were cracking open. The nerve and muscle pain in my arm (from diaphragmatic endometriosis) were on fire. One day, it was so bad that I could hardly talk to anyone. I debated running out on the spot and never coming back. I felt as if I was going to black out.

Then, things got even worse... After only two weeks, I had my first huge flare up: The kind where you cannot move, no matter what. I had contractions in my pelvis, shooting pain every which way, and crippling nausea. I called into work and they threatened to take away my job, saying they weren’t sure if this would work for them. This made me feel completely defeated. For a brief moment, I had a taste of what life would be like if I wasn’t disabled, and I didn’t want to lose that. I was completely heartbroken when I felt myself coming to terms with the fact that this wasn’t working for me either. Being the persistent person that I am, I returned to work a few days after the flare. I tried to hide from my boss because of the anxiety of confrontation. Thankfully, he wasn’t there. Then a few days later, another flare hit. This pushed me to make the decision I had avoided. I chose to quit the job and was reminded of why I was on disability.

Acceptance

I am so grateful the state has recognized my disabilities. That being said, it feels almost impossible to accept most days. In attempting to work outside of home again, I learned a lot about where my body is at now. Unfortunately, it's far from being okay. I’m not sure if and when I will be able to do the jobs I used to be able to do. I’m not even sure I’ll be able to do the ones I dream of doing. But what I also learned about myself is that I’m a very determined person. I'm capable of pushing through a lot to succeed, while also loving myself and my body enough that I know when to take a step back.

There’s so much I could say about working with chronic pain, but the biggest thing is the importance of listening to yourself. No matter what job you do, it is unbelievably hard to do the things abled bodies can do so easily. Acceptance is also hard, but I hope that us sharing our victories and losses can help each other move forward.