Making My Treatment Recovery Job One By Katy, Wife, Writer, and Yoga Instructor • March 5, 2019
For a variety of reasons, having to go to work with relapsing multiple sclerosis (RMS) can be unpredictable and challenging. In addition to not knowing if your left toes are going to trip you up on the way to the bathroom, or if your vision is going to suddenly double in the middle of a meeting, there is the whole other side of the disease that must be managed: office politics.
We all want to believe that everyone who has not experienced life with a chronic disease will at least be understanding and sympathetic. The truth of the matter is, those who haven’t lived it have no idea what this life is like.
For example, during the 17 years I’ve spent living with this disease, I’ve had supervisors and human resource managers ask me questions such as, “When will you be back to normal?” or “When do you think this flare-up will end?”
Those questions are always frustrating to me. I wish I had the answers. Every time an exacerbation forced me to take time off from work, I waited until I was feeling my absolute worst before asking for accommodations. I didn’t want to appear weak or incapable or have others think that I was looking for special treatment.
One time when I was having a relapse, I experienced symptoms like optic neuritis, paralysis on one side of my face, and all over body pain. It was a scary time, but those symptoms were eventually resolved with steroids.
My boss at the newspaper where I worked was very understanding through it all. In fact, he was supportive when I was approved to begin treatment with LEMTRADA. Because of its potential risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough.
I filled out my Family and Medical Leave Act paperwork, got my projects in order, and took a few weeks off from work to receive my treatment and recover from the infusion process. My LEMTRADA treatment was one infusion a day for 5 consecutive days in the first year. After that, I would begin monthly monitoring to detect serious autoimmune side effects, self-checks and annual skin exams to check for skin cancer (melanoma). The company knew that I would need some time off to recover from the infusions before coming back to the office, which was a wonderful blessing.
But the story was a little bit different for my next course of LEMTRADA, which was one infusion a day for 3 consecutive days, followed by monthly lab monitoring for 4 years or longer. I was working for a new company by then, and they were aware that I had relapsing MS when they hired me. But this prideful voice inside of me urged me to minimize the situation as much as possible and to only take off work for my treatment days.
After treatment, I tried to return to the office the very next day. I felt awful—moody, exhausted, still limping and in pain. I was having trouble concentrating. I was behaving like my own worst enemy because I wouldn’t give myself space and time to recover from the infusions.
It was my boss and the human resources manager who finally got me to slow down by calling me in for a meeting. “Katy, you don’t need to do this to yourself right now,” my manager said. “You have short-term income protection for a reason. Now is the time to use it. Your job will be here waiting for you when you’re ready.”
I was so relieved to hear that. I spent the next several weeks taking long baths, doing gentle yoga, eating healthful foods and resting. I gave myself permission to take a break from the stress I had been making worse by trying to pretend that I didn’t need time to recover from the infusions.
I was blessed to be working for an employer who let me do what I needed to do at the time. I was also grateful I had taken the proper steps to protect myself by signing up for and investing in the income protection the previous year.
Never be afraid to take the best care of yourself when living with this disease. We all know that when we fail to do so, relapsing MS will have its say in the end. Find an employer who appreciates your talents and understands that we all have our challenges to overcome once in a while. You will treasure that support.
Have you ever had to put your relapsing MS treatment ahead of your job? I’d like to hear your story.
- LIVING WITH RELAPSING MS
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Attend a live event or watch one online to learn more about LEMTRADA.
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