There is a gender divide in medicine when it comes to how pain is seen, treated, and perceived in women patients. I am familiar with and write about racial bias in pain management - I was not prepared for the presentation of the intersectionality of medical racism, and the sexism, in the form of under-diagnosing and under-treating my 10 year old bi-racial daughter's pain. Nor was I prepared for or willing to accept that anxiety, hers or mine, was the cause for her pain when she has a diagnose for IBD, Chron's Disease, and an undifferentiated Systemic Autoinflammatory Disease that causes objectives measures of pain (lesions, elevated SED/CRP levels, visible inflammation, etc.) that measure 10/10 or the crying face on the pediatric pain scale.
Being female, being bi-racial, being a child, and having a rare disease is a recipe for under-management of pain and doubting of symptoms. And with that under-management of chronic pediatric pain, is a host of problems ranging from difficulty in learning to increased risk of chronic illness and mental health issues as an adult. In her case, the pain as not been treated as part of her underlying illness - and dismissed by some of her specialists. And she has become disillusioned and disbelieving that doctors are there to help her.
As a former therapist, I almost found myself hoping that my daughter's pain was actually anxiety (hers or mine) and not the patriarchy... however, after a few years of therapy for each of us, lots of investigation of secondary gain, mind-body medicine courses, meditation, and a lot of yoga - our anxiety levels were and are measurably lower while her pain levels and inflammatory markers are higher.
During those years of surfing siloed care and "doctor doubts" her oral lesions grew deeper and more painful, her CRP/SED rates steadily climbed, and I continued to push forward to find another answer - working against my own fear that I would be seen as a Munchausen's Mommy Dearest. I also felt deeply that her pain could and should be taken seriously - her pain would leave her sobbing and limp with fatigue; missing birthday parties, trips to the pool, and other coveted childhood moments.
It is hard, given the data, for me to believe that this is not tied to the pervasive problem of under-diagnosing and under-treating pain in females and people of color. I would suggest were we turn our attention to research- we would find that female, children of color, are among some of the most under-diagnosed when it comes to pain. That the most vulnerable suffer the most and for the longest.
A few weeks ago we met with the Integrated Pediatric Pain and Palliative Care(IP3) Team - a team that sheds light on these and other dynamics around pain to alleviate the suffering of under-treated pain in children. It is the first time anyone on this healing journey has suggested my daughter probably downplays the extremity of her pain and that she has grown accustomed to suffering. She has grown accustomed to be doubted and disbelieved by those charged with her healing. And it is the first time since she became ill that I felt the absence of the patriarchy and racial bias in how her pain was perceived and discussed.
She was heard.
She was seen.
I am mermaid and rebel - a mama to two - I believe in art, music and magic and the rest I cover up with glitter and tattoos.