Living with chronic illness often means having limitations. It means adjusting your accomplishments to you limitations. There are very few things that I absolutely can not do, and most of those are because of my fitness level and not my actual illness. Mostly there are just days when I have to say “that’s not a task for today.” So I get things done, it just often takes me a long time to get to where I’m going.
Back in March I picked up 3 books from the library that I was excited to read. Because of chronic migraine I hadn’t been doing too much intellectual thinking and I was ready to build up my mental stamina again. Here I am in June and I’ve only reviewed one of the books that I have read this year. I’ve read a lot, but often sitting at a computer and writing is one of those tasks that has to be adjusted. Luckily since these books I’ve been reading are about life with chronic illness, I bet the authors understand my delayed reviews of their works.
Michele Lent Hirsch’s Invisible: How young women with serious health issues navigate work, relationships, and the pressure to seem just fine brought relatable stories of women living with invisible (and sometimes visible) illnesses. These stories were not just about navigating the medical system of doctors who are reluctant to believe women about their pain, but also the struggle to live life amongst the healthy.
In part 1 “Could Someone Love This Body of Mine” Hirsch discusses not only how sick women perceive their bodies, internally and externally, but the stress of finding a life partner and the role illness plays in that. The expectations for young women are that they are carefree, physically capable, and youthful. This is not always the case for young women with chronic illnesses. She relates how that not only do women often feel betrayed by their bodies, but they also worry about if they do find a romantic partner, that partner could leave at any time due to their illness.
Part 2 and 3 of Invisible address experience and complications surrounding work and friendships. A large part of relationships, work, and friendships is disclosure of a chronic illness. From informing employers about accommodations that may need to be made, to requesting time off for appointments and treatment, navigating a career can be tricky. Hirsch revealed that when she began full time work she did not understand the role of Human Resources, but when she became sick realized how important it was as she worked for a company without a human resources department.
After receiving a thyroid cancer diagnosis and disclosing this to her boss, her boss responded by saying “I need you to leave your cancer at the door.” I find this appalling. It is appalling but Hirsch also goes on to reason that at work and in friendships being sick reminds people of what she calls “deathyness.” This reminder often in friends and co-workers pulling back because they do not know how to handle feeling their own mortality.
The author then turns to the medical field in Part 4 and asks the question “Why Don’t They Believe Me?” Women share their experiences of encountering doctors who have disregarded their symptoms, leaving them feeling powerless and questioning themselves. When women are ignored or their symptoms are contributed to things like anxiety and stress, critical delays in diagnosis occur. Not only is this a problem specific to women, it becomes even a larger issue for marginalized populations.
In Part 5 Hirsch discuss how young women who are sick often feel the pressure to speed up motherhood. This is difficult for women who may want to have children, but also for women who are choosing not to. There are many aspects to both choices. Women with cancer may not even have the choice, often needing treatment immediately before any kind of fertility treatment can begin.
In “Sick Like Miss America” Hirsch concludes by addressing what being sick can look like. For a book called Invisible I found this to be an interesting choice. It can be difficult for young women who are sick or disabled to find role models. The author mentions recent Miss America contestants who are not afraid to show and discuss their illness. She also discusses the issue of what is often called “Inspiration Porn” where sick and disabled women are held up as inspiration for healthy women. Women who are in the 20s or 30s already have too many expectations to live up to, they do not need to attempt to live up to the raised expectations for how their bodies should adapt to their illness.
Throughout reading Invisible I found myself relieved that I met my husband several years before I became ill. I often comment to my single friends how glad I am that I do not have to date in my 30s, not just because of how hard making friends and dating is as an adult, but also because I do not have to chose how and when to share my illness with a potential partner.
Although we were married before I came ill, there were some changes that came to our relationship. Ryan suddenly found himself in the role of caretaker. Where he once had a vibrant, independent wife, he now was taking on the majority of the cooking and cleaning, as well as pharmacy runs, and doctors’ appointments.
When Hirsch discusses children she brings up points that I never even considered while making my own choice. Issues of body autonomy, medication use, and what we have to ask of our immune system. She comments, “I can’t imagine asking my out of whack immune system to do one more thing for me when it has already failed so many times.”
As someone who truly has an invisible illness, my appearance is often one of my least concerns. I find encouragement and role models from others who are living with invisible illnesses through their intellect, and how they treat others. However I have never had any issues with my appearance, I was confident before I got ill. I do not know how I would feel if my illness did affect my appearance such as bald, scars, mobility aids.
While the first parts of this book shared stories as well as statistics that backed women’s experience, the later parts rely heavily on narratives, I suppose there are some things that can not be quantified. I also got lost in a section where she discussion the health care of sex workers, and strayed from the topic of invisible illness.
All in all Invisible was a well researched and informative book. Perhaps one of the most important aspects is reminding women living with chronic illness that they are not alone, and their struggles are shared by many. Invisible: How young women with serious health issues navigate work, relationships, and the pressure to seem just fine by Michele Lent Hirsch was published in March of 2018 by Beacon Press in Boston.