The Politics of Gender Bias in Healthcare and Long-Hauler COVID
Or put another way, doctors telling women “I could refer you to a psychiatrist.” (Wrong Answer)
I am a woman suffering from long-hauler COVID (the colloquial term for someone who had COVID — I tested positive on November 9, 2020, and was mildly ill for a week — but who still has an odd collection of intermittent symptoms months later). Politics is my passion since everything involves politics; if there are two or more people in a room, then you have politics. And it dawned on me, with a mixture of fury, frustration, and another bout of my post-COVID chronic fatigue, that gender bias is not a thing of the past, but alive and well, and manifesting again with a vengeance towards suffers of long-COVID.
The solution to this will involve not just more medical research into long-COVID, but it will also involve politics. As wonderful as the Biden administration’s efforts have been on all fronts in dealing with the pandemic, more must be done in regard to the suffering of COVID long-haulers. In particular, it needs to be done in a unified way on a national level, with education to the public, as well as guidelines and information given to primary care physicians about the nature of long-COVID, how to recognize it, and what to offer patients in dealing with it. There are, here and there across America, long-hauler COVID clinics that have sprouted up to help us, but this is too scatter-shot, and too many people, most especially too many women, are falling through the cracks and suffering in lonely silence.
I recently joined an online support group for women with long-hauler COVID. Day after day, I am seeing the same story from new members as the group continues to grow exponentially, a variation in one form or another of “I’m not being taken seriously.” They are crying out in suffering and outrage, and I decided I wanted to give voice to their outrage (and mine) here.
It is important to distinguish between the already clearly known and recognized phenomenon of post-intensive care syndrome, in which those who have been hospitalized for an extended time with a critical illness experience lingering symptoms such as weakness and brain fog. The long-COVID I am referencing includes a category separate and apart from that, people who had mild illness, were not hospitalized, many of them relatively young or middle-aged, and previously healthy, some even previously very physically fit (in other words, people such as myself), but months after their acute COVID illness, they continue to have a maddening array of symptoms that come and go in seemingly random ways that include, but are not limited to:
- Shortness of breath
- Joint pain
- Chest pain
- Muscle pain.
- Headache or migraines
- Fast or pounding heartbeat
- Exercise intolerance
- Loss of smell or taste or odd aberrations in sense of smell or taste
- Memory, concentration problems
- Sleep problems
- Rash or hair loss
- Neurological symptoms of tremor, gait disturbance, numbness in fingers/toes, etc.
Most interesting to me though was this bit of information in an article for Scientific American by Carolyn Barber:
King’s College researchers …. identified patterns that suggested long COVID was twice as common in women as men, and the median age was 45.
The experience some of these women are having when they go to a doctor is unfortunate, but, frankly, not surprising. They complain of some variety of these symptoms, and perhaps raise the concern about a connection to the fact they had COVID, recovered, but then had these symptoms. The doctor runs tests, often including EKG (comes back normal), a chest X-ray (comes back normal), perhaps an echocardiogram (comes back basically normal), assorted blood tests including a D-dimer (comes back normal) and in the case of neurological symptoms of tremor and such, perhaps even a brain MRI (normal) and the doctor brightly announces “good news, you are fine.” Just one problem. We are not fine. I am not fine.
Then comes what is all too familiar to women in a doctor’s office (and by the way, this includes male doctors and female doctors, both can be the victims of internalized subconscious biases and assumptions related to a patient’s gender), they say “probably just anxiety” or “probably just stress, you need to relax” or “perhaps it is depression” followed by the offer of a prescription for antidepressants, and all of that followed by “I can refer you to a psychiatrist.” They mean well. But that is the problem with gender bias in healthcare, they always mean well. But what is the implication in all of that? The implication to these women is that it is somehow maybe “all in your head” or not a real thing, so go to a shrink.
In the online support group I belong to, every day, I and others are offering support to women joining this group with this complaint, either against their doctor or even against family and friends. Their complaint is feeling like they are not being taken seriously. We are not demanding an instant cure. We understand scientists are still trying to unravel the puzzle of the cause of this mysterious ailment, and why almost all tests come back showing no problem, when nonetheless there very obviously is something awry. Perhaps it is the case one’s immune system is running amok and periodically, randomly attacking various body systems in some form of autoimmune process. In any case, whatever the cause may be, whatever the best options may be for helping we sufferers of long-COVID and rehabilitating us back to some minimal basic level of activity and enjoyment of life again, the first most basic step is take us seriously. Please do not just hand us a bottle of antidepressants, give us a pat on the head and send us on our way to just muddle through the physical problems on our own.
As I said, the Biden administration has done a wonderful job with their approach to the pandemic, and they had to play catch-up on so many fronts. But now is urgently the time to turn attention to the politics of healthcare, turn attention to the fact that our whole system is really far too focused on “sick care” and for all the people suffering long-COVID, we need true holistic healthcare to help us physically rehabilitate and improve. I believe the CDC and other entities in the government can lead the way on this by providing more education and precise guidance to physicians on how best to tackle the incredible puzzle of the COVID long-hauler patient.
Step number one: Take us seriously. Please. That would go a very long way to helping us.