The experience of hEDS patients exemplifies the problems with healthcare
Dr. Allison Bond, in “Everyday bumps injured her joints, but finding the reason took half a century,” published in STAT on October 16, 2017, describes the experience of a woman with hEDS, who sought a diagnosis and medical care for decades within the medical system.
Listening to patients, believing their experience, opening our minds, and doing our homework – when did we lose that? This goes out to my hEDS patients as well as those struggling with ill-defined disease, who have suffered just as described in this article.
A few quotes from the article:
- ‘“The saddest thing about my life has been the necessity to hide my pain and suffering to ensure I was not labeled by the medical profession as being a psychiatric case,” . . .’
- ‘“A lot of people hear that it’s all in their head, and that there is no physiologic basis for their symptoms,” Francomano [geneticist] said. “Particularly if they’re healthy-looking young women, unfortunately there is a tendency to dismiss their experience.”’
- “The isolation and constant de-legitimization of her symptoms nearly broke her, . . . “
I have witnessed my patients experience just what this article describes – here, within systems highly regarded as the top in the world, and now, not decades ago, and, despite my support as a primary care physician. Sadly, the ongoing constraints imposed by large hospital systems, insurance companies, and government contribute to this situation, as does medical training, including a reductionist approach to health and disease. Doctors can be overwhelmed by “complicated” patients and not treat them with the thoughtfulness they deserve. There is not enough time to listen because of demands of paperwork and clicking boxes in EHRs, and the pressure to see more patients. Curiosity and learning are stifled by the same. Pervasive assumptions about women and minority groups continue to impact the culture of medicine. And the human desire to fit things into clearcut categories leads to assignment of a psychological “diagnosis” (and billing code!) rather than deal with attempts to unravel the unknown. Thankfully, there are doctors out there who break through this to treat patients such as these with respect and open-mindedness, and work with them to manage symptoms and improve quality of life, even when sometimes all there is to offer is a listening ear or trials of things that only might help.
Amazingly, my patients have been incredibly gracious in allowing me the time to do research and get up to speed with their experience and knowledge, gained out of necessity to help themselves. They have bravely gone to appointments they they have feared, and in which they have felt belittled and dismissed, but persevering at my request, and the the deep-sprung hope that they will be heard and helped. They have been willing to try medications and treatments in search of relief; and often turn to alternative therapies when traditional medicine shuns them.
And slowly, those who suffer from disease educate those willing to listen and push us to expand our knowledge base, so that when the next patient enters our exam room, we have one more possibility to consider that may save that person decades of searching.