This month, I am presenting you with a two-fer. I traveled a lot in the last two months and had the opportunity to catch up on, what is to me, pleasure reading. As someone with multiple chronic illnesses (lupus and rheumatoid arthritis), I devour illness memoirs. I know this may not be the genre of choice for everyone, but Sick by Porochista Khakpour and Ask Me About My Uterus by Abby Norman are vitally important books for women, or for anyone who loves and cares about women.
I connected with Khakpour and Norman on so many levels. Plus, Norman’s path has crossed mine on more than one occasion in our mutual love of Stanford Medicine X, a conference that was created to highlight patient stories and experience.
In addition, both women went to Sarah Lawrence College. I went to Sarah Lawrence. It was meant to be.
While both books center around the theme of not being taken seriously and female symptoms being psychologized, their stories are not the same.
Khakpour’s story begins with a tick bite that occurred at an undetermined moment in her past that led to Lyme Disease. Lyme Disease is tricky to diagnose and treat, and it can cause symptoms of psychosis. Khakpour’s story is unique in that her illness and misunderstanding of her illness by the medical profession led to a prescription drug addiction. This only complicated her situation.
Her story is bracketed by where she was living at the time and the people that come in and out of her life, some helping her situation, some making it worse.
“The nebulous symptoms plus the fracturing of articulacy and cognitive fog can cause any Lyme patient to simply appear mentally ill and mentally ill only. This is why we hear that young women — again, anecdotally — are dying of Lyme the fastest. This is also why we hear that chronic illness is a woman’s burden. Women simply aren’t allowed to be physically sick until they are mentally sick, too…” (Khakpour, p. 166).
Norman’s narrative begins with endometriosis, a disorder that causes uterine tissue to grow outside the uterus causing severe pain, bleeding and other issues. Much of what she describes is attributed to having severe menstrual cycles, and not to some other, more sinister force. And that’s the biggest problem for Norman. Her level of pain is not well understood by her doctors. The traditional pain scale is not an adequate tool for describing it.
“Once my period became a pathology — once it became more of a chronic condition than a monthly visitor, when the ramifications of this so-called natural phenomenon gone rogue started to dictate my every move — I realized that it had already altered me. It had shifted my sense of self, of identity. Endometriosis began to ruin my life long before I had a name for it” (Norman, p. 148).
In both books, diagnosis offers a moment of clarity in a world that no longer makes sense. But that clarity does not equal smooth sailing. Diagnosis does not automatically lead to a cure, and both Khakpour and Norman will likely always be sick. They will always be struggling to maintain their lives as writers, while also maintaining the visage of health they have left.
Like so many of us with chronic illnesses, their quest for answers was probably their greatest asset, and yet also, their greatest liability. They question doctors, they push for diagnoses and they maintain that as the experts on their own bodies, they know something is wrong, even if medical professionals don’t believe them.
In no way am I conflating these two stories, because they are very different. But, they are also similar.
The writing in both books is simply masterful and mesmerizing. It’s not just the words on the page, but how they are written. It’s the way they tell their stories, the non-illness parts of their narratives that are vitally important, the story within the story.
The lessons I took from these books were ones I already knew.
Being sick is hard.
Being a woman is hard.
Being a woman with a chronic illness is devastating in so many ways.
If you have experienced the medical system and felt satisfied at the end of the experience, consider yourself lucky. Unfortunately, the experiences of Khakpour and Norman, and myself, are in my opinion, the rule, not the exception. Still, they give me hope that, as patients, we can make things better. If we are loud enough and fierce enough.
It shouldn’t just fall on patients to want to make things better, though. Illness is a funny thing. It often creeps in, catching the person unaware. So today, you might be healthy, but tomorrow, you might be sick. What makes being sick difficult isn’t just the physical aspects of illness, it’s everything that comes with it. It’s everything that changes in your life in the moment you go from being healthy to being sick.