Over the weekend, Selma Blair posted a photo to Instagram effusively praising her colleagues on Netflix show Another Life. So far, so Hollywood behind-the-scenes peek. But Blair wasn’t showing off about her latest role or lobbying for Emmy votes; instead, she was thanking the costume designer on the show for physically helping to dress her, since, in August, the actor was diagnosed with multiple sclerosis, the immune-system disorder that affects the brain and/or spinal cord.
Alongside her picture, Blair wrote: “I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken GPS. But we are doing it.”
The 46-year-old recounted how she is currently in an “exacerbation”, meaning her symptoms are flaring up, and how she was eventually diagnosed by the neurologist brother of her friend Elizabeth Berkley, after over a decade of pain.
“I have had symptoms for years but was never taken seriously until I fell down in front of him trying to sort out what I thought was a pinched nerve. I have probably had this incurable disease for 15 years at least.”
This is a woman in an incredibly fortunate position. She is successful and white, with financial security and access to excellent healthcare. And, even with these many layers of privilege, it still took 15 years for her to find an explanation for her symptoms.
And she’s not the first woman who we might think is above being ignored by doctors. This year, there have been a number of stories about high-profile women being failed by the doctors supposed to take care of them, from Serena Williams to Lena Dunham.
If even these women are struggling to be heard, diagnosed and helped, what hope do women without access to their resources have?
Because women are taught that our bodies will likely betray us, and that pain is a part of being female: we bleed and cramp and cope. As a result, we live with pain and discomfort without asking for help for much longer than we should. We bear the load of domestic and emotional labour, acting as carers for everyone except ourselves, while women’s health remains a murky and uncharted corner of medicine.
Unconscious and conscious bias work together, to ensure that women’s health complaints are minimised, ignored, trivialised and belittled. Female patients are told they are hysterical, hypochondriac, anxious or paranoid – that it is all in their head
The gender bias falls broadly into two camps: reproductive health and auto-immune disorders. MS affects three times as many women as men, a skew that is also seen in other conditions like chronic-fatigue syndrome (CFS), ME, lupus and arthritis. These might be diseases and conditions that are misunderstood, but they are not uncommon; in the UK alone there are over 100,000 people living with MS.
Because many of these conditions and diseases are not always visible externally, diagnosis and treatment are dependent on the patient being able to describe their symptoms and, more importantly, on them being heard. This is especially true when patients are experiencing symptoms like tiredness or low moods, which might be mistakenly viewed as psychological rather than physical.
Unconscious and conscious bias work together, to ensure that women’s health complaints are minimised, ignored, trivialised and belittled. Female patients are told they are hysterical, hypochondriac, anxious or paranoid – that it is all in their head. The issue has been referred to as “healthcare gaslighting” and inspired several books, this year, researching the issue, including Maya Dusenbery’s Doing Harm: The Truth About How Bad Medicine And Lazy Science Leave Women Dismissed, Misdiagnosed, And Sick.
And, when women finally find themselves listened to, they must then face the dearth of research into conditions that disproportionately affect women, and the fact that, when studies are conducted, they often use male test subjects, making the results less useful to women’s treatment. MS is especially complicated, because symptoms can manifest in vastly different ways for different people.
For Blair, she is clearly still working but requiring help and understanding. In her post, she was honest about how her condition has affected her life: “It can be overwhelming in the beginning. You want to sleep. You always want to sleep. So I don’t have answers. You see, I want to sleep. But I am a forthcoming person and I want my life to be full somehow. I want to play with my son again. I want to walk down the street and ride my horse. I have MS and I am OK. But if you see me, dropping crap all over the street, feel free to help me pick it up. It takes a whole day for me alone.”
But there is one way in which Blair is no longer exhausted, and that is a reprieve from the not knowing. As she writes: “I am relieved to at least know.” She is no longer bouncing from doctor to specialist to clinic in search of answers, or alone at home, in pain and feeling abandoned. But many people, and especially women, are. And some of them will wait a lot longer than 15 years for that relief.