When I first became chronically ill, I was scared, confused, and desperate for answers. I was also no stranger to misogyny, but was still totally unprepared to uncover some ugly truths about how the medical world treats women in pain. I was (perhaps willfully) ignorant to the fact that women's pain conditions are still systematically underfunded, under-researched, and dismissed using every excuse from attention-seeking to hysteria.
I am very fortunate to have a family doctor who is compassionate, thorough, and takes me very seriously, but we are all unfortunate to have family doctors and GPs who, unless they are self-taught, have a very limited understanding of chronic pain treatment options. I've heard from various sources that med school students sometimes receive a day, or as little as four hours addressing the matter of chronic pain, a condition that affects 1.5 billion people worldwide (the majority of whom are women). It has taken me years of research and trial and error to find viable treatment options: a journey four hours could not begin to summarize. Something here does not add up.
Reflecting on my journey with chronic pain thus far, there are two medical appointments that stand out to me as polar examples of the worst and best of what Western medicine currently has on offer (to those who have financial and geographic access).
#1: While waiting for a bone fide headache specialist, my doc sent me to see a run-off-the-mill neurologist with a short waitlist. It was the first time I thought I might get some answers or solutions, and I had more hope and fear twisted up in my stomach than a five year old on the first day of school. My doc was running over an hour late, so I had lots of time to experience that twisty stomach feeling in the waiting room. When I was finally called, this doctor (who was male, if it's relevant) asked me minimal questions about my condition: only enough to confirm my diagnosis and the frequency of attacks. Then there was a basic neurological exam, the same that my family doctor had administered. Then there were my questions...
Doc, can you help?
What should I take?
What should I buy?
What should I do?
Who should I see?
... and answers as useless and vague as the day is long…
Take it if it helps.
Buy it if it helps.
Do it if it helps.
See them if they help.
And then, as if his curt manner, vague answers, and lack of eye contact weren't enough, when I asked for medical documentation, he sighed and said, "That'll be fifty dollars. I don't do this out of the bottom of my heart you know."
Now, perhaps he is sociopathic. No, really. Or perhaps he thought he was making a joke (with no smile or laughter involved), or maybe he simply had no idea how desperate I was for a smidgeon of information or guidance. His questions, after all, were not designed to gauge my level of disability or "comorbid conditions" such as the depression and anxiety I was experiencing due to the pain and a sudden loss of abilities, including the ability to do my job. The conversation seemed geared entirely on completing an arbitrary checklist and getting me the hell out of his office.
A more forgiving guess might be that he is just kind of an awkward guy, who has little to no training in how to offer constructive suggestions or helpful information to a female patient experiencing chronic pain, and for that I cannot blame him alone.
#2: When I finally did make it to my headache specialist, I had a very different kind of experience. Although I still waited an hour to see the doctor, my appointment itself was an hour long! My doctor (who was female, if it’s relevant) asked me a multitude of questions geared at painting a clear picture of my level of disability. I was asked outright about anxiety and depression, and was kindly handed a tissue box the moment I started to choke up.
I was given concrete guidance for medication, natural supplements, workplace accommodations, and specific lifestyle adjustments. I was also given a handy system for tracking my attacks and identifying triggers. I was told the clinic was committed to work with me until I experienced at least a 50% pain reduction.
I left this appointment feeling acknowledged, heard, and finally hopeful.
Unfortunately, from the stories of my friends and fellow pain awareness advocates, the former experience is far more common than the latter. It’s an unfortunate reality that we must often power through a barrage of careless, under-trained doctors in order to find ones who provide adequate care, and one that I hope will change quickly in the coming years.
1.5 billion people deserve better.