There are so many women in history who lived with disability and chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). Unfortunately, there is little information about them available so they can’t individually be a part of my Disabled Women in History series. However, in honor of chronic fatigue syndrome / myalgic encephalomyelitis awareness month and the May 12th Millions Missing campaign, I’m featuring several famous and influential women. This is not an exhaustive list as I’m sure there are plenty of women missing, and I stick to the history part and only feature women who are no longer living.
For ME/CFS awareness check out the Millions Missing campaign for health equality. They demonstrate around the world for equitable research funding, clinical trials, medical education, and public awareness for ME/CFS. Did you know:
- 25% of ME patients are housebound or bedbound
- 75% of ME patients are unable to work
- ME affects 15 to 30 million people around the world
- In the US, only 6% of medical schools teach about ME
- In the US there are only 12 practicings ME specialists
Other parts of this series:
Disabled Women in History: Noor Inayat Khan WWII Spy Princess
Disabled Women in History: Florence Nightingale and Fibromyalgia
Disabled Women in History: Rosemary Kennedy and the lobotomy
1. Leila Pahlavi (1970-2001) Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and disability
Leila is a fascinating person who I hope to get enough information to be able to do a whole post on someday. She was the youngest daughter of the Shah of Iran and his third wife Farah Pahlavi. This made her a princess of Iran. She was only nine years old during the Iranian Revolution in 1979. Her family went into exile and she eventually ended up in the US after the death of her father.
During Leila’s life, there were rumors that she lived with depression. By the time she was twenty she was complaining of experiencing: headaches, muscle, and joint aches, chronic fatigue. Doctors labeled her as a drug addict and she went to rehab several times. Leila moved around frequently and her doctors didn’t seem to communicate often. Shortly before her death, she made sure to inform her doctor in England that she was dealing with disability and being diagnosed with ME (chronic fatigue syndrome). She was in terrible pain, and she couldn’t sleep. She then stole prescriptions from her doctor and a few days later was found dead of an overdose.
Leila’s story is tragic, and hard to read. There are some harsh judgments out there about her behavior, but I have to wonder how much of it happened because of her physical suffering.
2. Laurie Walker (1962-2011) Chronic Fatigue Syndrome and disability
Laurie Walker is a Canadian artist who is featured in many Canadian art museums and galleries. She developed chronic fatigue syndrome in the 2000s which was disabling and affected the quantity of her work. She kept painting through her illness though by completing four drawings called “Prometheus Rebound.”
Laurie spent her time after diagnosis trying to find a cure for chronic fatigue syndrome. Although she wasn’t successful, she did make contributions to the research of CFS origins. CFS eventually caused her death in 2011.
3. Miriam Defensor Santiago (1945-2016) Chronic Fatigue Syndrome and Disability
Miriam Defensor Santiago was a Filipino Senator. In 1998 (before her diagnosis) she won the Magsaysay Award for Government Service (comparable to winning a Noble Prize).
She made headlines in 2011 as the first Filipino ever elected as a judge of the International Criminal Court. Sadly, she did resign in 2014 because of a CFS flare. During her resignation she said:
Since I was elected in December 2011, I have secured neither alleviation nor treatment from the medical profession for my illness, known as Chronic Fatigue Syndrome.¹
Miriam was diagnosed during her time as a Filipino Senator in 2008. The CFS diagnosis came after disabling symptoms of nausea, dizziness, and irregular heartbeat. During her term as Senator, her priority was to file Senate Bill 3195. This bill lined out the responsibility of the Philippine Department of Health and the Philippine Information Agency (PIA) to increase public awareness and knowledge of chronic fatigue syndrome. She said the DOH needed studies conducted on CFS to figure out the amount of Filipinos living with it.
It appears that CFS has slipped under the DOH’s radar, despite the fact that more and more Filipinos are being afflicted by it.²
Miriam Defensor Santiago died in September 2016 from lung cancer.
4. Joanna Russ (1937-2001)
Joanna was a writer and a radical feminist. She wrote several books including:
and more…
Joanna wrote from an early age and as a senior in high school was selected as a top ten Westinghouse Science Talent Search winner. Because of the success of her novels, she became well known in the 1960s in the science fiction category. Joanna was also a playwright, essayist, and nonfiction writer.
She published very little later in life due to her disability from chronic pain and chronic fatigue. There’s little information available about her chronic fatigue syndrome diagnosis, but I did find this somewhat offensive and clueless critique of her health.
The National Academy of Medicine reports ME/CFS can leave patients more impaired than those with other disabling illnesses, including type 2 diabetes, congestive heart failure, MS, and end-stage renal disease. Click To Tweet5. Katherine Lawrence/ Kathy Selbert (1954-2004)
Katherine Lawrence was a well-known writer for the show Stargate Infinity, a science fiction writer, and she lived with chronic fatigue syndrome. Her real name is Kathy Selbert, but she had so much love for T.E. Lawrence and Jerome Lawrence that she changed her name.
Unfortunately, we don’t know much about Kathy’s life. Though the rumor is that CFS and lack of healthcare access led her to suicide. In 2004 they found her body with a suicide note attached.
6. Renate Maria Dorrestein (1954-2018)
Renate Dorrestein was a Dutch writer, journalist, and feminist. She began her career as a journalist for the magazines Libelle and Panorama. Her introduction to the International stage was in 1998’s Een hart van steen (A Heart of Stone), which was translated in 15 countries. Experts refer to Renate as the first Dutch “female gothic” writer. She also helped found the Anna Bijns Foundation, a prize featuring “the female literary voice.”
Renate lived with chronic fatigue syndrome for over ten years.
These just a few of the women I found who lived with CFS/ME. There are so many more out there that are invisible, which is why the Millions Missing campaign is so important. If you are able, please consider donating to their fund.
Sources
- Macaraig, Ayee. “It’s Final: Miriam Steps down as ICC Judge.” Rappler, Rappler, 3 June 2014, www.rappler.com/nation/miriam-resigns-icc-judge.
2. GMA News Online. (1970, January 01). Miriam: Doh must attend to chronic fatigue syndrome problem. Retrieved May 05, 2021, from https://www.gmanetwork.com/news/news/nation/159268/miriam-doh-must-attend-to-chronic-fatigue-syndrome-problem/story/
3. Estimating the Disease Burden of ME/CFS in the United States and its relation to research funding. Retrieved May 12, 2021, from https://www.oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php
Photo Credit: Disabled and Here
This is absolutely fantastic! It’s painfully sad to read about their stories though, isn’t it? I suppose some of it is empathising when you also live with ME/CFS. I have to admit total ignorance here as I’d not come across any of these amazing women before your post. I’m going to read up on few of them like Pahlavi. Brilliant post, thank you for putting it together.xx
It’s definitly painful to read what they went through. I really want to learn more about Pahlavi and her life, because it seems so tragic. Her mother wrote a book and I’m wondering if she shares about Leila in it, but it’s super expensive.