The decision to stop working due to chronic illness is sometimes a personal choice and sometimes a forced decision. In this post, I am going to share my experiences in the workforce with chronic illness and why I stopped working.
My Work History
I knew I wanted to work with children when I was a teenager. In my mind, I was going to grow up to be a social worker and help struggling kids, like me. Although I did go to school for social work, life, as usual, had other plans.
I was fortunate enough to be able to stay home with my children when they were young. My youngest son had many health issues as a young child and required special schooling. In order to stay near him, I took a job as a paraprofessional at his school. My first day on the job, I knew I wanted to be a teacher. So, I returned to school, while working full time, to complete my degree in elementary education.
While completing my degree, we moved from Japan to Germany and I began working with students with moderate to severe learning disabilities. I had the time of my life! Seriously, the first day I was terrified because I had never even been around children with severe disabilities, but I fell in love with all the kids that came through those doors. I learned a lot about myself, and about unconditional love, while teaching them.
Finishing my degree was fairly lackluster. I went to school remotely, so there was no graduation or celebration. Just a quiet ease into my own classroom. My first classroom was full of more students with disabilities, albeit emotional, rather than physical or mental. I loved all the kids that came through those doors, too. And, although not a social worker, I did help a lot of struggling kids. When a nine year old feels safe enough to share exactly how a drug deal takes place on his steps at night…. that’s magic. It’s heartbreaking that a nine year old should know and understand what was taking place, but magical that I had the ability to help him in some way.
Working with Fibromyalgia
When I got my first paraprofessional job, I had already been diagnosed with fibromyalgia and rheumatoid arthritis. I was already learning my physical limitations. Tramadol was my best friend most days in Japan. I worked with an extremely supportive staff, who were willing to help with errands or transporting students from classroom to classroom. My administrator made sure I was never on staff to supervise outside.
When I got to Germany, I was taking the maximum dose of Nortriptyline and Flexeril. Although my pain was mostly manageable if I maintained a strict schedule. I went to bed at 9:30 every single night and I took a 30 minute nap immediately after work. I could only participate in activities on Saturday, and Sunday was a complete day of rest in order to prepare myself for the upcoming week. The fog that naturally comes with fibromyalgia was worse with the medications I was taking. School was a struggle since it required additional focus and cognition.
My rheumatologist prescribed me Modafinil to help with the focus and fog, but if I didn’t take it super early in the morning, I was up all night. I wasn’t very good at taking it early in the morning, so I was up a lot of nights.That didn’t last long.
Then we tried Savella.
Barf. I was so nauseous, I would go to school and have to teach from the floor so I wouldn’t get dizzy or vomit. I lived on Saltines for six weeks. Great way to lose weight, not so great for a healthy brain.
Eventually, I decided to stop taking all the medication. I knew I needed to chose between thinking clearly or reducing my pain. As getting my degree was vital to my personal success, I chose clear thinking over pain. And I was in pain all the time.
Here’s the amazing thing about children: they’re resilient and aware. As soon as I felt a flare coming, I shared with my classes the illnesses I have and how they affect me. It only took one time. The line slowed down while moving from class to class. Small groups ran like clockwork with little re-direction on my part. Voices automatically lowered. The kids became more patient, gentle, and kind- not only with me, but with each other. I was damn good at my job.
Why I No Longer Work
I’m still pissed off about the reason I stopped teaching. For ten years, I had a supportive team of people around me. Supportive administrators, support staff, and comrades. And then a district rezoning left me with an administrator who was a narcissistic bully who was also pissed off at the team of teachers she inherited. I wasn’t the first to go, and I also wasn’t the last. It’s how I went that pisses me off most, though.
Turns out I have something called Complex- Post Traumatic Stress Disorder. Honestly, I had never heard of C-PTSD until my mental and physical health took a complete nose-dive. I experienced a deep depressive episode that lasted months. That’s right, months. Not days, not weeks. Months of darkness. Months of struggling to find that elusive sliver of light to hold on to. Within the haze of depression was the agonizing physical pain of an unrelenting flare that stayed just as long as that first depressive episode.
So that’s how I left work. I called in (as we do when a flare strikes) on a Friday and received several e-mails over the weekend demanding my presence at various meetings. When I tried to explain the situation to my administrator, I was admonished and reprimanded for the need to take care of my physical well-being so that I could give my students my absolute best. Which is nothing less than all students deserve.
When my primary care physician suggested a break with FMLA (Family Medical Leave Act) in order to allow healing from the flare, the administrator denied my FMLA leave. That’s against the law, by the way. So are the nasty e-mails I receive while on FMLA. But, who’s counting all that, right?
Anyway, FMLA turned into Short Term Disability, that ran into Long Term Disability, which I am still on. Still trying to get medication and physical symptoms under control. Trying to get the C-PTSD under control. Still trying to get the newly diagnosed Bi-Polar Disorder under control. There’s a whole lot of ‘still trying’ there, huh? Yeah. That’s my world these days.Still trying.
That’s My Story
Those are the reasons I no longer work. Personal or forced, neither option is easily digestible if you have an independent spirit. There is no easy way to process the grief that comes with the loss of job, loss of financial security, and loss of purpose.
Unfortunately, many who live with a chronic illness- physical or mental- end up having to grieve those losses.
Now it’s your turn: What’s your story?
Please share it.thanks