I acknowledge that I am speaking as a carer and not as a person who has these conditions.
Shortly after I met my now wife, Brandi, she asked me to accompany her to a doctor’s appointment. She was suffering with what she already knew was a sinus infection and possible bronchitis. She knew, because she had a long history of the same. I agreed and threw on some jeans, a nice t-shirt, sneakers and proclaimed I was ready. She looked at me stunned and the following conversation ensured:
Brandi: What are you doing?
Me: Got ready for your appointment.
Brandi: This is a new doctor, I need him to believe what I say, you need to dress appropriately for this to happen, haven’t you ever been to a doctor before?
Me: Sure, this is how I always dress.
Brandi: If you look too sloppy, the doctor won’t believe you. They’ll think you are drug seeking or not literate enough to express what you really feel and suspect. Also, you can’t look too good or the doctor won’t believe that you are as sick as you claim you are.
Eventually we worked this out and showed up at the appointment. I couldn’t believe what happened. The following is an abbreviated timeline:
Doctor *Looking at me*: What seems to be the problem?
Me: She is actually the patient.
Brandi: My nose is stuffed up and it has been for about a week. Bright green mucus,…
Doctor *does examination*
Doctor *looking at me*: How is she sleeping at night?
Me: Uhh, Brandi, how are you sleeping at night?
Brandi: Not so well, the stuffiness and headache are keeping me awake.
Doctor *looking at me*: I’m going to give her a prescription, make sure she takes it as per the directions.
This is not an exaggeration. There was no reason for the doctor to think I was her guardian, father, or otherwise her caregiver.
Brandi also, at the time, had a life-long illness of some sort that had thus far gone undiagnosed. She’d been to hundreds of doctors and had many tests. Her medical file at the house was easily 5 inches high. Her symptoms were all over the place and seemingly unconnected. I spent hours every night on the web trying to figure out what was going on. I kept encountering articles about a connective tissue disorder called Ehlers-Danlos Syndrome, that seemed to fit almost everything perfectly.
The one problem was that Ehlers-Danlos Syndrome comes with chronic pain, yet Brandi wasn’t on anything for chronic pain, nor did she complain of it. So, I wondered if it was still a valid direction. I learned that she did indeed have chronic pain and it had been brought up many times with doctors. However, the treatments she’d been given over the past two decades were antidepressants, anxiety medications, and other medications associated with treating what the doctors thought was a psychological disorder, none of which helped in any way. So, chronic pain became one of the invisible aspects of her invisible illness. But, why was her chronic pain not being treated?
Back to Dr Google.
I found an astonishing article from 2018:
"Brave Men" and "Emotional Women": A Theory-Guided Literature Review on Gender Bias in Health Care…
Background. Despite the large body of research on sex differences in pain, there is a lack of knowledge about the…
The researchers did a review and selected 77 articles published in medical journals. One section hit home immediately:
How Do I Look (Appearances)? The reviewed studies demonstrated that the appearance of women with chronic pain was judged by their doctors. Some women were mistrusted when they looked too good, as in “you can’t be sick,” while others were judged as unreliable if they did not look good enough. “Statements like ‘You don’t look ill’, ‘You always look so healthy!’, or ‘You are so young!’ had made them feel irritated, sad, and frustrated, rather than flattered. Some of them said such statements indicated little understanding for how much pain they really had.”
Then another section…
Differences in Medication. The search for gender bias and chronic pain generated a number of studies on pain medication given to men and women. The results of these studies showed that women, compared to men, received less and less effective pain relief, less pain medication with opioids, and more antidepressants and got more mental health referrals.
Then there were these gems:
The reviewed studies showed that women with pain can be perceived as hysterical, emotional, complaining, not wanting to get better, malingerers, and fabricating the pain, as if it is all in her head.
Other studies showed that women with chronic pain rather are assigned psychological rather than somatic causes for their pain.
The reviewed studies demonstrated that “medically unexplained” conditions often go along with an unwillingness among professionals to believe in the women’s pain.
In a Canadian study, general practitioners and specialists were interviewed about fibromyalgia patients. They regarded fibromyalgia patients as malingerers, time consuming, and frustrating. Some clinicians even held the patients accountable for their pain.
I joined twitter and found that there has been quite a bit of discussion about this topic. One twitter user Asher_Wolf presents a compelling comparison of two separate visits to the Emergency Room with the exact same symptoms. In the first visit, she was alone, waited for hours without being seen, got no referral, but did get some pain killers. For the second visit, she was accompanied by a well-dressed man, was seen right away, taken care of, wasn’t dismissed and was even treated politely.
Ok, that is one person’s story and anecdotal evidence doesn’t prove there’s bias in the medical system. But wait, there’s more…
In this tweet, Karina Wagenpfeil (@ChronicKarina) shows a screenshot of one of Medscape’s USMLE practice questions of the week.
The question in the tweet’s image reads
A 36 year old woman presents to the emergency department because of pain. She has visited her primary care physician multiple times in the past several months for various pain related complaints. On each occasion, no physical or laboratory findings were found to explain her symptoms. The patient has no worker’s compensation case open. She is quick to suggest treatment options and listens intently whenever any medical professionals are in the room. Which one of the following diagnoses characterizes her unexplained physical symptoms?” The options are:
1. Somatization disorder,
2. Conversion disorder,
5. Munchausen syndrome
The question has since been removed and the original provider apologized for it in this tweet:
The fact that the question was even asked points out a problem of gender bias. Note how all of the diagnosis options are psychological and none offer the possibility that the doctors haven’t run the right test, don’t know about the medical condition the patient truly has, or that there is currently no laboratory test that can show the cause. There are many conditions that cause pain for which there are currently no laboratory tests, hypermobile Ehlers-Danlos Syndrome being one.
I am more than happy to continue going to my wife’s appointments to advocate for her. However, I should not need to attend her appointments for her to be listened to and get good quality care. Asher, and many others like her, will not be able to get the same care as my wife, because there is not a man in the room. This is entirely unacceptable.
For more information about hypermobile Ehlers-Danlos Syndrome, please see the following resources: