One of the Hardest Health Decisions I’ve Had to Make

I remember asking, and then begging, my parents to let me get a job. I promised to keep my room clean and my grades up, to ride my bike and not ask for rides and to set my alarm and get myself up on time. I made so many promises and begged just to be able to apply for that job because a job meant freedom for me.

My family struggled financially growing up, but we just about always had what we needed thanks to help from other family members. And my mom would do just about anything she could to get us our wants when she was able.

When I was 12, my parents were in a car accident. A drunk driver hit them driving the wrong way on the freeway. A two-income household turned into zero income and a ton of debt.

I got the job and I loved working. And I loved earning money. I worked at a small family-owned farm market with some awesome people who taught me so many invaluable life lessons, and the money meant I could buy the things I thought would make me happy: clothes, makeup, new purses. It meant that I didn’t have to look poor.

I worked there all through high school and into college. From that point forward, I was never without a job, and I often had multiple jobs, even when I was in school. I loved the interaction and feeling like I was accomplishing something. I felt like I was working my way up and out of where I came from.

Then in 2009, I was without a job for the first time in my adult life. I was 24. This was also my first medical leave and the beginning of what has become a long journey of being chronically ill.

At the time, I was working for a company that provided residential services for individuals with developmental disabilities. I remember starting to feel tired and run down more often and thought I was just working too much. Then one day I woke up, got out of bed and fell over. This was the beginning of many doctor’s appointments and symptoms, and I was eventually being diagnosed with narcolepsy, rheumatoid arthritis and fibromyalgia.

I was off work for a total of 10 months and every minute of it was like torture to me. I hated not being able to work, not being able to support myself and feeling useless and without a sense of purpose. My situation and being diagnosed with some pretty serious illnesses led to a major depressive episode. When I did go back to work, I started off part-time, quickly ended up working two jobs and promised myself I would never be off work again. Now that I had answers, I thought I could manage my health and build my career.

I kept working over the next few years, but managing my health wasn’t as easy as I had imagined it to be. I was able to avoid extended medical leaves, especially for few surgeries. I tried to be strategic with vacation and sick days, so I could rest and take care of myself while still working. When my job as a manager with another company working with people with disabilities became too much because I was on-call a lot, I found a job in a medical clinic without an on-call responsibility. I was determined to do whatever I could to keep working this time.

In November 2015, I came down with what I thought was just a case of pink eye. Boy, was I wrong. I had uveitis and optic neuritis, which caused a temporarily loss of vision in one eye and was off work for six weeks.

Again, I found myself in a situation where I felt I couldn’t continue at my job. This time, it was because of stress and fatigue. It was becoming harder and harder for me to stay healthy with the level of stress at that job. So while I was off, I found a job working from home (another adaptation to try to stay in the workforce).

I worked at home job for a few months before I became sick again. This time, I had kidney stones that would require invasive surgery, and once again I was unable to work, even though I had been working from home. Even still, I was planning on going back after surgery. But two surgeries turned into six, and due to extended healing time and continuous flares from other pre-existing conditions, it’s now December and I haven’t been back, nor do I plan to.

Deciding not to go back to work permanently was one of the hardest decisions I have ever made in my life, and it was not made lightly. It meant more than just not working. It meant giving up the security of a paycheck and dealing with the feelings of being inadequate and being unable to support myself.

I’ve felt shame and guilt. I’ve grieved over losing my capability to produce and the last source of socialization with my working peers. It has added stressors over money, has had an effect on my mental health and self-worth and has made me cry more time than I can count. But in the end, I have to come to accept that this choice is the best one for my overall health.

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