Book Review: A Girl's Guide to Working While Having MS
I was diagnosed with MS two weeks before completing my training as a polysomnographic technologist (sleep technologist).
I'd gone back to school at the age of 45 to achieve this new direction in my professional life, and the one-year intensive program required full-time attention.
Feeling betrayed by my body
Let me tell you, I was livid about my diagnosis of RRMS! Not because I felt like my body had betrayed me, and not because I was afraid of disability in my future.
I was angry because I have always been an ambitious, career-driven person. I had just spent the last 20 years of my life raising children. I was so excited to get back to a full-time work life. This return to school and to a meaningful career had been a long time coming.
There's nothing quite like an MS diagnosis to deliver a buzzkill to one's ambitions.
I read a great many books within the first few months of my diagnosis. Many explored the research into MS or provided personal stories I could draw strength from.
However, looking back, I believe the most important book I read was Women, Work, and Autoimmune Disease by Rosalind Joffe and Joan Friedlander.
About Women, Work, and Autoimmune Disease
Here's a description I found on the Amazon page which absolutely captures the value of this book:
"The authors take a hard, yet inspirational look at what it takes to be successful in a job, including developing strategies and tactics, evaluating communication skills, building a support team and considerations for self-employment."
I knew it was possible to keep working in spite of my MS. I had already seen two good friends face up to an MS diagnosis, and yet they kept going. If they could keep working (and both still are), so would I.
Anyway, I loved my field of work. I wasn't going to trash all my new learning and training without a fight.
How MS challenges women's working lives
Women, Work, and Autoimmune Disease (WW&AD) could certainly inspire men, but it was the female perspective that made it especially valuable to me.
The authors quickly pointed out that working with an autoimmune disorder was not just a career issue but a women's issue.
"Clearly, although many of us in the AD (autoimmune disease) sisterhood struggle to stay employed, still others are unable to find a way to enter the workforce. Since 75% of those who live with an AD are women, and since AD comprises a large portion of chronic illness, AD undoubtedly plays a major role in the choices women making regarding their work life."
I was at this crossroads when faced with my diagnosis.
I still had teenagers at home while in school to earn my credentials. Even if I had been a healthy person, raising two daughters through their adolescence while investing in myself and a career path I so longed for were already goals at odds with one another.
Then my MS made itself known.
When MS interrupts one's career plans
The day I took my textbooks and notes to the coffeehouse to study for my spring final revealed a new obstacle I never expected: I couldn't read. I could see the words on the page, but I couldn't comprehend them, I couldn't even speak them out loud.
That was how I first discovered I had something more serious than the usual parental fatigue. I discovered that a host of seemingly unrelated symptoms that I'd written off as the side effect of being a working mom (even if only part-time) were no longer avoidable.
I soon had to face down two realities: the revelation of a chronic illness which might disable me, along with the knowledge that I was on the cusp of doing something worthwhile with my life in the post-empty nest years.
How this book helped me
This book told me it was okay to strive to face both challenges head-on.
I've had days where I wondered what the point was in continuing on this new path if I was only going to end up having to leave it behind because of my illness.
But then I've had days where I felt like going to work— steeping myself in the work I love, the work I couldn't wait to wake up in the morning to achieve. That desire was, still is, a saving grace.
Joffe suffers from MS, though many of the case studies she and Friedlander shared in the book spotlight women with other potentially disabling chronic autoimmune conditions.
She writes in chapter 2 of WW&AD,
So much of our time is spent learning about MS soon after diagnosis that it truly can become the only thing we ever focus on. Having an occupation helps to retrain our focus, not on being sick, but on being productive and connected to the world outside our bodies.
I also took heart when Joffe described what it was like to wake up completely consumed by fatigue:
"Some days, I was so tired that I literally had to drag myself into the car to take my daughters to school. I'd often think that I should go back to bed rather than sit down to work in my home office. But I did work, and by lunchtime, I felt like a human being again."
I could totally relate! Those words gave me so much to hope for. After all, she has since written a book and continues to work. She did not let MS stop her, even if giving in can be so appealing.
It's all about balance
Even so, I was scared about what the future held. I was moving into a major lifestyle change that was destined to affect me physically: working overnight shifts.
That is what a sleep technologist does: we work 12 hours overnight in the sleep clinic prepping and monitoring patients during their sleep studies.
Regardless of what some people imagine, there is no sleep on these nights, but constant patient care, reports on the half hour during studies, and loads of paperwork to satisfy the bureaucracy of healthcare.
After patients went home, we still had to clean and disinfect all of our equipment, restock our supplies, strip and remake the beds, and take care of other protocols.
I mostly remember leaving work in the early morning glazed with sweat and buzzing with the last cup of coffee that would keep me just awake enough to drive home. After a fast breakfast of Cheerios, I would fall into bed and sleep hard until 5pm.
After a year on the job, miraculously, I studied for boards and earned a second credential. This additional education impressed upon me the very concerning reality of choosing to work night shifts: our circadian rhythms need to remain in sync when we have chronic illnesses like MS.
If I kept working between 7pm and 7am, I was going to send myself into future relapses, if not to an early grave.
Tips from the veterans of chronic illness
Immediately I reread WW&AD when I hit this crossroads. Almost two years of working nights had passed by then, and I could literally feel the changes in my body: memory lapses, inability to concentrate, a dysregulated core body temperature, and anxiety I'd never felt before.
The potential threat of progression caused by circadian dysfunction loomed large.
Thankfully, the book's richest resource is its wide and varied cross-section of anecdotes shared by women who went back to work, or who continued to work, in spite of their illness.
That's not to say that all of these women ended up doing exactly what they wanted to do.
Some had to ask for special accommodations in order to do their work, such as a specific kind of lighting, a place to lie down during breaks, or a more supportive chair. Some never disclosed their condition to their employers out of fear they would lose their jobs.
Others took a lot of flak from coworkers who may not have been aware of some of the more invisible AD conditions these women were living with. (It's hard to live with such a secret, but in the face of employment survival, disclosure may not always be the best path, even if the ADA is on your side.)
Still, others described finding different work inside the same company, or choosing a shorter shift, or devising a way to work from home. Some left their field entirely and found something simpler, but just as rewarding.
There were also those who opted out of employment altogether and found satisfying work in volunteering for community programs.
Creating an employment experience that works for me
From these clever workarounds and a little patience, I stepped away from the night shift and created a freelance employment experience that still works for me.
Granted, it's not ideal— there are no health benefits for contract work, for instance, so I must rely on my spouse's. But this work allows me to merge two sets of skills: my previous (pre-diagnosis) work as a journalist and editor, and my current (post-diagnosis) work as a sleep technologist and clinical educator.
No longer do I have to work graveyard shift! Nor do I have to commute (which, with my problems with sensory overload, would be too hard to manage). My memory is better, I'm no longer living in a strange watery tunnel, and pain and discomfort come at a minimum.
I also have enough freedom in my schedule to go to my necessary doctor's appointments (MRIs, blood panels, neuro checkups) without having to deal with paid time off or the judgments of officemates who don't "get it."
It may not be the perfect career path for some, but it's the perfect career path for me.
Want to work? Be inspired
I could not have made these changes without the support of the inspirational stories captured in WW&AD.
I also learned from the book how to identify and build upon support groups (of existing friends and family, as well as community and online groups). Their belief in my ambitions is no small thing.
Perhaps the most important lesson I took away was one of persistence. WW&AD did not advocate for "powering through" MS. In fact, if that had been the message, I would have given up on the book.
No, instead, it taught me to acknowledge that MS was part of who I was, but that I still had the necessary imagination and strength to build a sustainable work life all the same.
There are still days of fatigue and cognitive fog, moments when medication side effects quarantine me to the bathroom, and other day-to-day reminders that the monster could wake up at any time and wreak havoc.
But my work life is what I make of it, and every day I can go to work is a triumph. My job still gets me out of bed in the morning, even if I sometimes stay in my pajamas all day.
Don't give up
I strongly urge any woman with an autoimmune disorder, who is looking for purpose in their working life, to settle in with this book to see how other women have responded to the impact of their condition on their career ambitions.
There may come a time that you might need to leave the job you love, and WW&AD addresses this reality with options, resources, and inspiration as well.
Disclosure of one's illness to bosses and human resource departments is also discussed, as are real-world tips for managing job stress, practicing resilience, and reclaiming the aspects of a working life that most allow you to be the whole person that you are.
It's worth noting, there are no guilt trips to be found in this book: however able and determined you are is all that matters.
I don't deny that part of my current situation is a matter of being dealt a better hand than others have been dealt. I readily admit that my outcome will not be the same as another's. I also know incredible women who are far too progressed in their MS to be able to do exactly what they'd love to do, and that the work their brains and bodies will allow them may not be as satisfying for them. I appreciate that frustration.
Even then, those who face the greater obstacles of an MS-damaged brain and body may still find motivation, inspiration, and hope in this book. WW&AD ultimately focuses on what could be possible, no matter where your condition places you on the disability spectrum, and offers tools for bringing one's ambitions to fruition.
Does anyone else in your family have MS?