A patient who chooses to live reacts to one who chose to die

I blogged a couple of days ago about Anne Örtegren, a patient long suffering with myalgic encephalomyelitis/chronic fatigue syndrome who chose to end her life after much deliberation. Her poignant last blog written before she died attracted a lot of attention outside and in the community of sufferers.

Here is a brief but insightful response from Wilhelmina Jenkins, who chooses to live and try to inspire others in that choice.

A bit of background about Wilhelmina. She became ill with ME/CFS in 1983 while working on her PhD in physics at Howard University. She described to me the experience of feeling her brain had shut down so that she couldn’t even comprehend the chapter she already written. She became totally disabled in 1987. She was not formally diagnosed until 1988  and became a part of support groups and advocacy efforts since then. Her daughter became ill with this disease in 1991 as a high school student.

ME/CFS is a devastating disease. There’s no question that it burns to ashes the life that you thought you had and leaves you with sickness and pain and a quality of life lower than any other major disease. Many people, after a long struggle, decide that they can’t go on any longer. I understand that. I have felt that way many times. But if you can stay, please stay. We need you. We need every voice in the fight for health equity for those living with this disease. We need your witness. We need your stories. And we need to know that you stand with us in the struggle. I do not care if we agree or disagree about anything – I still want you here. You are unique. You are valuable. Reach out if you are in doubt about going on. There will be a hand there for you to grasp, because even when things are darkest, you are a part of a community and you are loved. And when you choose to stay, if no one else has ever said it, I will – you are my hero.

Follow Wilhelmina Jenkins on Facebook.

Readers may also be interested in  The illusion you will be able bodied forever and the limits of empathy.

 

Rosanne Cash: Resisting a diagnosis of medically unexplained symptoms, being found to have a brain tumor

A moving video provides Rosanne Cash’s testimonial to the power of science over superstition and pseudoscience.

The Grammy award winner suffered over a decade from headaches eventually diagnosed as a result of a rare Chiari I malformation and syringomyelia.

Before getting successful brain surgery, she had to resist misdiagnosis by professionals and New Age healers, some of whom suggested that her not-as-yet unexplained symptoms were a psychosomatic condition and even her fault.

Rosanne Cash credits her eventual diagnosis and successful treatment to the power of science and to strategy of “persist and verify.”

Persist and verify… The power that we abdicate to others out of our insecurity — to others who insult us with their faux-intuition or their authoritarian smugness — that comes back to hurt us so deeply… But the power we wrest from our own certitude — that saves us.

Brain Pickings

Every week I look forward to the arrival of Brain Pickings on Sunday with its free wonderful curated selection of highbrow, but incredibly engaging readings. You can subscribe to weekly alerts here.

This week’s selection was a reading by Rosanne Cash of a poem by Adrienne Rich, “Power,” a tribute to Marie Curie. The poem itself is a great treat, but I’m recommending Rosanne Cash’s first few minutes of very introduction. But I am confident that you will continue to the end of the short poetry reading and hear of the heroism of Marie Curie.

A rare and misunderstood condition

You can find out more about her decade-long struggle to confirm a diagnosis that she’d already provisionally made of herself, as well as the details of her condition here.

The Diagnosis of medically unexplained symptoms

Medically unexplained symptoms (MUS) is a horribly unvalidated psychiatric diagnosis that leads to a cessation of any search for a physical basis for a patient’s complaints. You can learn more about MUS in a blog post by Allen Frances and Suzzy Chapman, Mislabeling Medical Illness As Mental Disorder.

Instead MUS leads to speculations about the primacy of  psychological factors in maintaining and exacerbating her condition.

The diagnosis is not ruled out by actually confirming that a patient has one or multiple physical health conditions, nor even a prescription for medications that may explain some or all the symptoms and complaints.

The diagnosis is applied on the basis of a professional deciding that the life of a  patient like Roseanne had become subsumed by her preoccupation with her complaints.

Many serious physical health conditions initially manifest themselves in vague and intermittent symptoms that could lead to a diagnosis of medically unexplained symptoms.

If a friend or family member informed me that a professional had provided a diagnosis of medically unexplained symptoms, I would suggest they run from that professional and seek appropriate medical care.

Seeking treatment for not-yet-diagnosed medical conditions

it is thought

Goofy and patronizing pamphlet offered to Danish patients

If Rosanne Cash had been in Denmark, she might have encountered Per Fink and his colleagues who would ’have offered a cognitive behavior therapy with no hope of alleviating her problems, but a lot of haranguing and undermining of her conviction that her condition had a physical basis.

Cash might have been offered ineffectual mindfulness training in the Netherlands.

If Rosanne Cash had sought help in the UK, she might have encountered neurologist Suzanne O’Sullivan. Rosanne Cash might have been offered amateurish  Freudian explanations of the source of her suffering in her early childhood experience. You can find an excellent critique by Nasim Marie Jafry of O’Sullivan’s pop book All in the Head here.

In the UK, Rosanne Cash might have gone to an NHS clinic influenced by Trudie Chalder and the PACE investigators that would’ve argued that her suffering was being maintained by false illness beliefs.

Anywhere in the world, Cash might have encountered a professional who has too much faith in a flawed Cochrane review tainted by undisclosed conflict of interest and outcome switching.

In the US, Cash might have gone to a prestigious medical center, only to be informed that her headaches  must be due to her unacknowledged child sexual abuse  – a crackpot, but award-winning theory.

She might even have encountered a trauma-informed therapist who would attempt to co-construct with Cash false recollections of early sexual abuse. If Cash protested that this abuse had not occurred, the therapist might counter that she had repressed the experience and needed more work to uncover it.

But Cash persisted, resisting, and refusing to abdicate to the authoritarian smugness and quackery of the professionals and quack healers and for over a decade.

Excerpts from 10-Year Ache: Singer Rosanne Cash on living with Chiari I malformation and syringomyelia 

I’ve had headaches for as long as I can remember,” says Cash, who lives in New York City and has made a name for herself over the last four decades as a musician and a writer. She has been nominated eleven times for a Grammy and won the 1985 award for Best Female Country Vocal Performance. Her 2010 memoir, Composed, was critically acclaimed.

Cash’s headaches worsened during her second pregnancy. By 1994, they were so severe that she finally consulted with a neurologist. Still, it wasn’t until 2007 that Cash’s Chiari I malformation was accurately diagnosed. The first neurologist Cash went to thought the singer was experiencing cluster headaches—an exceedingly painful and relatively rare kind of headache that tends to occur in a cyclical pattern—but the medications she prescribed offered little help.

The second neurologist, a headache specialist, diagnosed Cash with migraines. When the headaches continued and intensified, the diagnosis changed to atypical migraines.

“This went on for a decade,” Cash says. “A decade!”

And

Rosanne Cash even wondered if she might have a Chiari I malformation after discovering the term online. She discussed it with the headache specialist, but an MRI came back negative. Although most experts consider MRI to be the best way of diagnosing Chiari I malformation, it isn’t flawless, according to Dr. Singh, in part because a malformation can change over time.

The singer frequently experienced neck pain and stiffness, and at times her headaches were severe enough to knock her off her feet. “Sometimes it felt like someone had hit me in the back,” she says. “Once I even dropped to my knees, the pain was so intense.” Her general practitioner determined that she had Lyme disease. “But after she treated me for Lyme disease, nothing changed,” Cash says.

During these years, Cash tried a number of treatments and approaches to managing her pain, including migraine medications, yoga, acupuncture, massage, and chiropractic adjustments. Most offered temporary help at best. “Sometimes not even temporary,” Cash recalls.