#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face of the ME community.
Send in a still photo or 5-second clip of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. We will include these clips of people with ME from around the world in the re-release of Kaeley’s music video “Believe Her” on May 6th. Send to [email protected].
The new music video will be part of a larger virtual concert called #Bedfest that #MEAction is producing on May 6th in a lead-up to the international day of awareness for Myalgic Encephalomyelitis on May 12th. Read more here, and join in the concert. RSVP for #Bedfest to let us know that you will be participating in the virtual concert.
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Two years ago, Kaeley Pruitt-Hamm got a bug bite that developed into late-stage Lyme disease and triggered her development of Myalgic Encephalomyelitis (ME). Even as the 27-year-old musician could barely hold up her head for more than two minutes per day, she knew she wanted to record music to help other people understand the excruciating plight of having a chronic illness, especially one that is misunderstood and dismissed by the medical profession.
Kaeley will debut her EP, Hi From Pillows, out in May on Local Woman Records. She has just released a music video of a song called “Believe Her” from the EP.
Kaeley was inspired to express her pain through music after hearing stories about how art has changed people’s minds from apathy to action. One such story was about a doctor who dedicated his life to researching a disease affecting white blood cells after meeting only one patient whose father wrote poetry about the experience.
“I wanted to release this album to help bridge the gap in understanding and empathy of people who don’t understand what it is like to live with chronic illness,” Kaeley said. “Art enables people to viscerally feel the urgency and depth of the situation – as opposed to just writing policy reports, doing scientific studies, or protesting in the streets, which is what I was doing before I was bedridden and forced to become a musician. We need to combine all types of persuasion to successfully advocate for patients with illness.”
Working in Washington, D.C. for a non-profit training young people in advocacy at the time she became ill, Kaeley’s health deteriorated so rapidly that she was forced to return home in Seattle to be cared by her parents. Her band sent her a high-quality microphone in the mail, and she began to record songs from her bed using GarageBand. Kaeley describes how she would perform the whole song in one take and then collapse back into the bed for a couple of days to recover.
“I vomited out the songs,” Kaeley said.
She waxed and waned on having the strength to play the piano or the ukulele; mostly, she relied on the support of her musician friends.
“I had to simplify the sound,” Kaeley said. “I had to make the music more accessible and affordable for myself, which is the spirit of folk music in general. And since I couldn’t work a desk job or afford expensive recording studio time, I had to get creative with the way I offered my music to the world to help fund my medical treatment.”
“Believe Her” is the story of not being believed by doctors, but it is also the story of women not being believed who have suffered sexual assault, especially when society deems the perpetrator as someone of good status. Kaeley speaks from personal experience in the medical system as well as having her childhood trust breached by a man who was extremely well-trusted in her family and community.
“Even people who appear to know everything and to be so put together, whether they are experts in lab coats with 30 years of experience as a doctor, whether they have the highest office in the country, or are a trustworthy-seeming person, we all have the propensity for letting our blind spots harm others,” Kaeley said. “We all have the capacity to hurt others because we don’t understand what they’re going through.”
Kaeley said the pattern of society blaming survivors of trauma, and of those survivors blaming themselves in-turn, occurs in chronic illness, as well, especially when blood tests fail to correctly diagnose an illness, which is common in ME and Lyme.
They told her she wasn’t holding her pencil correctly, she needed a standing desk, she should meditate more. A pain doctor told her outright – without even looking at her blood work or barely examining her body – that her issue was psychosomatic and he wrote her a prescription for a book on Carl Jung. When Kaeley asked the doctor how he was so sure, the doctor replied, “I’ve been doing this for 30 years. Don’t question me.”
“It has taken a lot of time to undo the shame that is coming from that,” Kaeley said. “When your nervous system is malfunctioning in such a severe way, it’s pretty difficult to heal yourself only by talking about it, analyzing your dreams or breathing deeper.”
Kaeley has launched a Patreon campaign to enable her to continue to make music from her bed. Support her music here.
A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model