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Transforming

The ringing tones of Laura Hillenbrand’s defining moment

In 2007, the CFIDS Association of America issued a commemorative publication entitled “Defining Moments: 20 Years of Making CFS History.” Included was an essay by Laura Hillenbrand, the celebrated author of Seabiscuit and Unbroken, whose personal courage is such that — if you are not familiar with her work already — you will want to know her better.

We ran across that contribution this week. You can read the entire piece here, courtesy of the Solve ME/CFS Initiative. It speaks strongly and clearly on a subject we feel passionately about: transformation.

Laura writes of her introduction to Chronic Fatigue Syndrome when she first became ill in the late 80's:

Virtually unstudied and invisible to standard diagnostic test, CFS existed in a vacuum of understanding. In the absence of easy answers, an arrogant, irrational assumption was made. If extant tests revealed nothing, the problem wasn’t that medical knowledge was limited, it was that patients weren’t really sick.

ME/CFS had this stigma in the late 80’s — hypochondria and fakery — and somehow it still has that stigma now. Thankfully we hear more and more full, fierce voices calling for acknowledgment and appropriate response… and yet, it is not enough. Not by a long shot.

A 2016 research article in the Journal of Medicine and Therapeutics brought the following to our attention recently:

The 2015 NAM report on ME/CFS noted the lack of research funding, the lack of spending outside of the fields of psychiatry and psychology, and the disbelief, stigma, hostility, and lack of clinical care that patients are subjected to by the medical community.
The 2015 NIH Pathways to Prevention report noted that current research had neglected the biological factors underlying the disease and that the medical and research communities had allowed “patients to be stigmatized [7].”

This is still happening all over the world. Laura’s experience, and the experience of many others, as she describes it:

I was called “lazy” and “a deadbeat” and accused of playing for attention and pretending to be ill. From doctors, acquaintances, even relatives, I received not compassion and care but hostility, derision, disgust, dismissal. When I asked for help, I was excoriated for troubling other people just so I could enjoy being waited on.
Intellectually, I understood that my illness was real, and that I was blameless. But emotionally, it was impossible to be steeped in scorn without absorbing it.

This is not a momentary experience that she’s describing. It’s a cascading shifting of reality over months and years. Its effects bear a strong resemblance to the effects of gaslighting. Add this to constant pain and dysfunction, and it’s no wonder that individuals living with ME/CFS so often have the symptoms of post-traumatic stress disorder, too.

Many sufferers of this disease do not even know that they could be fighting for their rights and insisting on more appropriate treatment, because their experience of interacting with others is so strange and changed from what they knew before.

And their capacity to address this alternate reality they are suddenly living in — to even cope with it adequately — is physically and cognitively handicapped by complex, multi-system dysfunctions that simply do not respond to “shake it off.”

So of course, as Laura describes, it only gets worse from there:

I became so afraid of encountering contempt that I avoided seeking help even when I desperately needed it, compounding my suffering exponentially and leading me into relapses. When I couldn’t avoid asking for help, I felt overwhelmed by guilt, especially when the assistance I requested was given with bitterness. Over and over again, I drove myself to collapse to prove that I wasn’t malingering.
Worst of all, I felt so suffused with shame that I couldn’t offer my body the compassion that it needed to heal.

So that’s how we become the living dead.

We die in our beds, but we don’t often die — instead we are prisoners, in pain, in hell, losing hope that something will change.

ME/CFS that is very severe, or under too much stress, progresses to the point where the affected individual can’t move, speak, bear to hear voices, or tolerate being touched. They wear noise-cancelling earphones (if they can tolerate that pressure against the skull), eye coverings to block out light, and only the softest clothes if they can bear much clothing at all.

They don’t die, but they do. Their lives have been lost. Their contribution, their work, their art is lost. Their hearts are still beating, but they are not living.

No one knows who will end up with a case this severe, whether it comes on swiftly or gradually over time. I think we all have begun to realize that it could be any of us, especially those of us whose basic needs are still not met. Remissions feel like reprieves, but relapses come on suddenly. None of us want our voices lost, and so many of us do suffer that loss.

Yet, Laura Hillenbrand found a way to use her voice, as some lucky others of us will — and she used it brilliantly. Even bedridden, housebound, beset with myriad dysfunctions, and deeply affected by those years of shame, she found her transformation:

At first, telling my story was intensely uncomfortable. But my perspective quickly changed. I began to focus on the fact that I was speaking not for myself, but for countless other people who were enduring CFS. Though I was bedeviled by the sense that my own illness was unseemly, when I thought of all the other people whose lives had been stolen from them through no fault of their own, and whose suffering was exacerbated by an unjustified stigma, all I felt was compassion.
That change in perspective freed me, and suddenly all I wanted to do was fight for understanding. I became more and more involved with CFS advocacy. I spent a full year writing a lengthy article for the New Yorker, telling my story with the raw honesty that I had never been able to muster before. The experience was transforming.
All of my useless years of suffering now had a meaning, a purpose. I could use them to help someone else.

No matter how much has been taken from us, and no matter how much destruction has been left in the wake of our journey through this disease… we sometimes discover that sharing what we’ve gone through brings us closer to a community of people who share the same understanding — and can even break open a new understanding in others who have never had that harrowing experience at all.

This is how we find out how strong we can be.


Please consider adding your voice to ours and sharing what you’ve learned about ME/CFS with others. If you’d like some ideas about how to support us, take a look at the Open Medicine Foundation and #MEAction.net.

If you’re still at a loss, you can always email invisible@gut.media — we’re always happy to make suggestions.

As always, thank you for reading and spreading the word.

— Meg

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