The second to last time I saw the actress Selma Blair onscreen was in a 2018 horror film called “Mom and Dad,” a Hulu recommendation based on my questionable taste in gory dark comedies. The premise is straightforward — parents all over the world wake up one day and, charged by an unknown static force, want to murder their children. Not all children, just their own. Nicolas Cage, playing essentially Nicolas Cage, is the dad to Blair’s mom. Afterwards, I couldn’t stop recommending the movie to anyone unlucky enough to be in earshot. The film may not have been good, but it offered a possible, albeit deranged, meditation on the underexpressed frustrations — loss and sacrifice — of suburbia and middle-age and parenthood.
Blair spoke about how for years she had been “giving it everything to seem normal,” unaware that she was in the midst of an MS flare-up and had been since the 2011 birth of her son. She spoke about how doctors assured her that the crippling fatigue she was experiencing was “just” exhaustion related to the ordinary tribulations of motherhood. None of the early doctors believed her complaints warranted further evaluation, like an MRI. This, despite the fact she sometimes needed to pull over and take a nap on the short drive home from her son’s school.
As she spoke, my mind flashed briefly to my own past exchange with a male gastroenterologist years earlier. “After I eat, I feel like my body is unable to function,” I explained, carefully. “Sometimes I feel this...this rage, or these heart palpitations and it’s just...I can’t take it.” I trailed off. This wasn’t going to work. I was sweaty, frustrated and weak, and he was busy and unimpressed. He recommended I look into better ways to better manage my stress and my post-meal anxiety.
Two months later I was diagnosed with LADA, a slow-progressing form of type 1 diabetes in adults. It turns out I didn’t need to meditate after a meal, I needed to take insulin before it.
Chronic illness narratives are clunky, and fraught with the emotional baggage the host carries from doctor to doctor in hopes of an answer.
Chronic illness narratives are clunky, and fraught with the emotional baggage the host carries from doctor to doctor in hopes of an answer. Often it is only after a diagnosis has been made, that the onset of vague symptoms — headaches, fatigue, nausea, anxiety — can be seen for what they inevitably signify. Selma Blair’s public coming out, as it were, is important for several reasons, not least of which is simple awareness. But she has also highlighted a particularly sticky and frequently gendered issue felt acutely by those of us with chronic illness who can struggle for years to get the medical profession to even acknowledge something is amiss.
“It’s called a snowflake disease because it’s different, like a fingerprint, for everyone,” Blair explained partway through her interview, detailing how her symptoms appeared in non-linear batches. This phenomenon is true for MS but arguably it’s also true for many other chronic conditions, certainly the autoimmune kind to which my own body has become finely attuned. I also have Grave’s disease, a thyroid condition in which my body makes too much thyroid hormone. Under control now, its origin story is riddled with fits and starts, periodic episodes of mania, insomnia and a decade-long bout of chronic diarrhea.
The precise cause (or causes) of MS remain unknown and there is no single “MS test” that can be administered at the start of symptoms. But its prevalence rate is significantly higher in women than it is in men. Indeed, a good chunk of all autoimmune diseases disproportionately affect women, and, like MS specifically, can take years to properly diagnose. This means, on average, there are thousands more women than men going to American doctors each year complaining of fatigue, headache, or pain only to have their symptoms dismissed or misdiagnosed as simply the consequences of modern living.
And this phenomenon doesn’t simply impact women with chronic illnesses. A 2008 study by the University of Pennsylvania found that women typically waited longer than men to receive treatment in the emergency room for acute abdominal pain. The seminal (and perhaps now somewhat dated) 2001 study “The Girl Who Cried Pain” affirmed that women’s pain was more likely to be dismissed as “emotional” than taken seriously as a signifier of medical distress.
“I am just a person who has diarrhea.” “I am just a person who doesn’t feel well.” I remember leaving that original gastroenterologist’s office years ago in dismal spirits. The doctor didn’t think anything was wrong, and I had somehow failed to communicate the gravity of what I was experiencing. The lack of a diagnosis felt like my fault.
The doctor didn’t think anything was wrong, and I had somehow failed to communicate the gravity of what I was experiencing. The lack of a diagnosis felt like my fault.
I can now appreciate the leap between “I’m in distress when I eat” and a relatively rare autoimmune form of adult diabetes is a large one, but I wonder too why we haven’t gotten better at considering it might not just be stress, or mommy fatigue, or any number of ailments that are relegated to the corners of “women’s pain.” Especially since we know, scientifically, that most serious chronic conditions creep in with initially innocuous symptoms.
The Sunday before Blair’s interview on “Good Morning America,” I was discharged from the hospital following a four-day stay for a C.diff bacterial infection. This highly unpleasant condition can weasel its way into the colon after a course of antibiotics — which I’d been prescribed that week. The physician’s assistant knew this, but he told me diarrhea was a common occurrence and I would be fine once what was likely “a stomach bug” cleared up. Some hours and innumerable toilet visits later, a doctor confirmed the C. diff diagnosis. I burst out laughing before the tears ran down my face. “Sorry,” I said. “Honestly, I’m just relieved you can treat it.”
I was hydrated and lucid by the time Blair gave her interview, and told America about how she too had cried tears of relief at her diagnosis. Not just because there was finally a name, and a reason, to her years of pain, but because there was a way forward that hadn’t existed when no one was listening. She had, and subsequently offered her audience, what anyone struggling to manage chronic illness wants: hope.
Caira Conner is a writer living in New York City. You can follow her on Twitter at @cairaconner.