Challenges I’ve Faced in Health Care as a Person with ME by Kate Singleton

Speech she gave on May 12, 2018, at the Washington, DC Millions Missing Rally, with a few details added.

".......Prior to my ME diagnosis, I worked in healthcare for a decade as a healthcare social worker. I was a hospital trauma social worker, a case manager at a clinic for people with HIV/AIDS, and an addictions counselor in a hospital’s outpatient treatment program. I also taught patients and providers about passions of mine, health literacy and improving healthcare communication, as a consultant.

I’m particularly proud of some publications I created for teaching about health literacy and health care in adult education, the Virginia Adult ESOL Health Literacy Toolkit and Pictures Stories for Adult ESL Health Literacy. I wrote the Toolkit from my bed after developing ME."

"As a hospital social worker I worked with people facing all kinds of difficult diagnoses, but it’s different for ME.

The fact is, because the illness and co-occurring disorders are so complex, so poorly understood, so stigmatized, and not taught in medical schools or other healthcare training, there is an extraordinary extra workload put on the shoulders of people with ME — —
people who are working with severe brain fog and other neurological challenges, with severely limited mental and physical energy.

In spite of all those symptom challenges, I would say that the people I know with ME are often the most highly health literate people I’ve ever come across because they have had to read and digest research on the condition for themselves and educate the healthcare system at all levels about their illness and what might help or hurt it. It’s madness that the system expects this of people this sick."

full article here: