I was 29 years old and had been married for two months when I lost vision in one eye and was bedridden. The diagnosis was multiple sclerosis (MS). At first I didn’t have a clue what that meant. I spent the next four months regaining my strength and my vision. What I couldn’t possibly have known then was how long and how deeply chronic illness would transform my personal and my professional self.
I grew up in the feminist 1960s and I always assumed that I would have a family and a career. When I was diagnosed with MS, it didn’t occur to me that this could change. At that time, my identity was wrapped around being a photographer/multi-media producer and I was deeply invested in my career. I’d been on this career path since college and I was poised for the next step in my career as a multi-media producer in a local firm. It was a very physically demanding role with long hours and lots of travel. After my next “flare” of symptoms, a few months after I returned to work, I decided to apply for a job in the same firm but on the account side, which would give me a more predictable schedule and a reasonable, 10-hour work day.
It was a painful decision but I actually didn’t think about it a lot. At that point, I kept thinking this was all just a temporary situation. And so I made the first of many switchback career turns. I didn’t realize, however, how physically difficult and emotionally complicated it would be to continue to work with a debilitating and disabling illness.
Over the next few years, as my husband and I were planning to start our family, the MS flares continued but they were relatively mild and manageable. By the time our first child was born, I had left the world of producing for college teaching, thinking this would make it easier to manage my health, family, and work. By the time our second child was born, I was sure this was the right decision for me. Six years later, however, my body would redirect me yet again. I’d been a college professor for six years when a second autoimmune disease, ulcerative colitis, made it too difficult to be in front of a group. I was frequently and unpredictably running the risk of having an “accident” and would have to take very frequent bathroom breaks. This couldn’t be ignored, even for someone like me, who was used to overlooking symptoms. I knew that I wasn’t doing a good job anywhere – with my family, my students, or my health.
I went on disability and for the first time since I’d left college, I was unemployed. Although I became involved in community volunteer commitments, I was deeply unhappy – and not just because of the ugly disease. My self-esteem, already suffering from living with a debilitating disease, took a nose dive when I was no longer a person who worked. I missed the stimulation and interaction I got from working. Living with an unpredictable illness had made it vitally important for me to know that I could at least count on my ability to support myself and my children if I had to.
Let’s face it. The job description for parents should read as follows: be ready for the most physically, emotionally, and mentally demanding job you can imagine. Throw in a chronic illness that puts extraordinary demands on one’s time, and one’s physical and emotional state, and it’s easy to see why many women would chuck their jobs if they have the financial means.
And, as I found, when you live with a chronic illness, most people (including your parents, your friends, your doctor, and maybe even your husband) will not only encourage you to stop working, they’ll applaud you for it. Save your limited energy for the kids, they say.
Who could argue with that? I could, and I do.
That argument makes sense if it is the only piece of the puzzle you are looking at. I don’t propose that every mother should work. Nor that every woman with a chronic illness and children should work. But I do believe that if a person lives with chronic illness and wants to work, she should not be saddled with guilt.
The reality is that living with a chronic illness is a difficult and complicated road to travel. Forget looking for the GPS (or even an old-fashioned roadmap). You’re making it up as you go.
The loving relationships that I have with my husband and children provide a critical life support that nurtures and sustains me. But my day-to-day life has often been physically and mentally tough. When my body isn’t cooperating, I’ve needed something outside of my family to remind me that I am a vital, productive person. When I couldn’t move from my bed, the distraction of a work project helped me rise above the confines of that sick body. When my children were young, a hug from them made my heart sing. Now that they’re grown, just looking at them or hearing their voices brings a smile. But nothing distracts me from my pain, fatigue, and disabilities — nor gives me a sense of job well done — the way work does. Maybe this is even more the case because of my diminished body. I will never know. I have no way to test that theory.
There’s no doubt that being able to continue to work and earn a reasonable living while raising a family is difficult for even healthy women and much harder for those of us with a chronic illness. But what a worthwhile goal to put one’s energy towards. It remains the key factor in my own long-term health plan. It could be in yours, too.