Health Shot: Gendered treatment of patients with energy limiting conditions
And also, a rant about empathy
Before we dive into this week’s Health Shot, here’s what’s coming up in Inner Workings…
the craziest things men did during my time in Silicon Valley (get ready to cringe)
more on living and working as a highly sensitive person (I can’t wait to hear from my fellow HSPs in the comments!)
Lady’s Illness Library interviews with
, , and others (these are quickly becoming such a rich source of community and inspiration for me)
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As I was looking through the recent research for this week’s summary, I came across an article titled, Women's Digital Health Market Set to Expand Rapidly, Driven by Rising Chronic Diseases. On the website, above this cold market trend prediction, were tickers for the S&P 500, The Dow 30, Crude Oil, and Gold. The women’s digital health market, the article said in almost promotional language, is set to increase by $500 million dollars between 2022 and 2023 from about 2.5 billion to 3 billion, and “reach a staggering $6.31 billion in 2027.”
“This growth is attributed to the increasing prevalence of chronic diseases among women,” reported the article, “which is driving the adoption of digital health solutions.” Ultimately it was trying to sell me the full report.
This stopped me in my tracks. Market sizing reports like this used to be part of the mundane ins and outs of my days at McKinsey and my time running a healthcare technology business in Silicon Valley. It is par for the course in any business, really—we must know! What are the trends? How can my business be in a position to take advantage of them?
But reading this particular market analysis on a topic that I find so deeply emotional raised in me a big sadness about how far away we’ve gotten, as a business-oriented culture, from people. The fact that there can exist an article about women’s chronic diseases skyrocketing, and that the only conclusion drawn can be that this trend will drive digital health solution adoption, and furthermore that many people (like me, formerly) can read things like this and find them very normal—this all demonstrates the severe and tragic damage our collective empathy has had to undergo to accommodate the needs of businesses.
The market trend summary wraps up: “In conclusion, the Women's Digital Health Global Market Report 2023 illuminates a thriving industry on the cusp of transformative growth.” Reading this gave me one of those moments when I feel like either I’m crazy or everyone else is crazy. “Thriving?” “Transformative?” We are talking about the unprecedented and alarming rise of chronic illness in women. It’s hard to convince myself I’m the sane one, but I’m pretty sure I am.
Ok, that’s my rant.
Now, for a snapshot of some new research!
Disbelief and Disregard: The Gendered Experiences of Energy Limiting Chronic Illnesses
Bottom line: The large majority of women, trans men, and non-binary people who seek care for energy limiting conditions feel they are not listened to or not believed, and many are also misdiagnosed. This status quo has wide ranging negative affects on mental health, self esteem, and well being.
Study summary: A report from the University of Liverpool provides new evidence of the extraordinary disregard within the medical system for women, trans men, non-binary and gender nonconforming people with energy limiting conditions (ELCs). ELCs conditions include neurological, musculoskeletal and autoimmune diseases, ME/CFS, fibromyalgia and Long Covid. The study used survey data of over 900 people, primarily in the UK, to collect stories and generate insights on the hallmarks of treatments experiences for people with ELCs.
Findings: The report found that 75% of respondents felt they were not listened to or not believed by their healthcare providers. This disbelief has negative impacts on “mental health, wellbeing and self-esteem; relationships with families and friends; exacerbates chronic illness; and acts as a barrier to people accessing welfare, benefits and social care, along with reasonable adjustments in employment or education.” The data also showed widespread diagnosis delays and misdiagnosis; 31% of respondents said it took more than ten years to be diagnosed.
The authors of this report have also partnered with artists to generate images and an animation that portray the common experiences and patterns among people with ELCs. I found these images highly informative and effective at communicating patterns that are sometimes difficult to describe in words.
This information is not novel to anyone who has sought healthcare for ELCs, but even a modest investment in research in this area has been lacking. New data helps elucidate and quantify the extent of the problem.
A sister project, Imagining Better Futures of Health and Social Care with and for People with Energy Limiting Chronic Illnesses, involves working with artists and people with ELCs to explore what the future of health and social care might look like, to better serve people with ELCs. This is really cool stuff! If the topics of chronic illness & creativity interest you, I highly recommend checking it out for more information and ways to participate.
Get forthcoming writing on the craziest things men did during my time in Silicon Valley, more on living and working as a highly sensitive person, and Lady’s Illness Library interviews with Emily Bazalgette, Russell Nohelty, and more. Use this link for 25% off - good through tomorrow!
Good and justified rant. WTAF. Especially when considered with the obdurate lack of research funding for many of these same diseases. There’s a trend there, for sure, and it smells like ‘accidentally on purpose’.
The one thing I can say about this issue, is that treatment of women and their health issues has actually improved since I was a young woman, and a mother. I'm 66 now and I have seen vast improvements over the decades. We still can do better. Absolutely. I'm working on a piece about two missed diagnoses that I had research to figure out what the problem was and then advocate for the right care.