Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

A Fundamental Right Quashed

Carol has been well for 25 years, but the memories of her time with ME/CFS were still fresh. She’d just graduated from graduate school when she, like so many others, got a flu that never lifted. It was years before Carol recovered – years during which she was able to experience the full weight of the medical community’s rejection.
As she talked, it was clear that it wasn’t just the debilitation, although at one point it was extreme (taking a shower was all she could muster for the day) or even the pain that she experienced, that really got to her. It was the rejection by the medical community.
Many men and women with ME/CFS, of course, experience medical rejection, but for women, particularly professional women with careers like Carol, there’s probably an extra bite to it. To have worked that hard and then not to be believed when you’re really hurting; that clearly cut deep for Carol.
In her Fall 2016 President’s letter Carol referred to  not just the pain of the disease or the diminished lives it brings but “the barely veiled disdain from those who question whether we are really sick”.
It was as if she felt that a fundamental right – the right to be believed and taken seriously – had been squashed.  I got the idea that ME/CFS is more than a medical problem for her; it’s also, given how she and others have been treated, a women’s issue.  When she saw the job opening at the SMCI she said she had to have it….
Read the entire article here: https://www.healthrising.org/blog/2017/05/02/passionate-pragmatist-carol-head-fight-mecfs-equality-smci-pt/

Facebook
Twitter
WhatsApp
Email

1 thought on “Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I”

Comments are closed.

Latest News

a blue square image that features waves as the background. The 2025 #MillionsMissing logo at the top. followed by the words, Why We're sending out an SOS. A life preserver is in the bottom right corner and the meaction logo is in the bottom left corner.

Why We’re Sending out an SOS this #MillionsMissing

On May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.  HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to

Read More »

Writers Guild Initiative Writing Workshops: Apply Today

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community! The workshops consist of three sessions during

Read More »
Purple rectangle. on the left: image of the book cover for Nobody's Empire. On the right the words: Virtual Interview + Q&A with Stuart Murdoch. MEAction logo on the bottom corner.

Virtual Interview + Q&A with Stuart Murdoch

Stuart Murdoch, from the band Belle and Sabastian, will be interviewed by #MEAction Minnesota’s State Chapter Leader, Terri L Wilder, about his recently released novel, Nobody’s Empire, on Saturday, April 19th at 1pm ET/6pm BST. We hope you join us for this virtual event to learn more about his debut novel. Tickets are available for

Read More »