Laura Hillenbrand, Chronic Fatigue Syndrome, and me

In the clips below, Laura Hillenbrand (author of Unbroken and Seabiscuit) explains some of the extraordinary difficulties of living with Myalgic Encelphalomyelitis /Chronic Fatigue Syndrome (ME/CFS).  She is often unable to stand or even sit up, and she once went for two years without leaving her house – not to mention experiencing constant problems with cognition, concentration, and balance.

Hillenbrand on Fox News (three minutes); Hillenbrand on Face the Nation (eleven minutes).

 I am posting this because I have been coping with ME/CFS since late 2006.  Although my situation is not quite as severe as Hillenbrand’s, I am often essentially immobile, with other debilitating symptoms as well.  On days when no one sees or hears from me, it is most likely because I am housebound or bedbound.  Sometimes it is impossible to manage the keyboard.

I have not spoken much about ME/CFS, even to close friends, because it has been very hard to bring myself just to say the word “fatigue,” which is a trivializing and demeaning description of the illness.  People with ME/CFS are not tired or worn out in any ordinary sense; rather we are neurologically disabled.  But as Hillenbrand has explained, ME/CFS patients are frequently challenged as malingerers, and treated with disbelief and disdain by their families and physicians.  Here is how Hillenbrand described it:

“When almost everyone in your world is looking down on you and condemning you for bad behavior, it’s very hard not to let that point of view envelop you, until you start to feel terrible about yourself. I just began to feel such deep shame, because I was the target of so much contempt.”

 I have not had that misfortune – perhaps because I was stricken later in life, after I had established myself as an academic – but the stigma is real, and for many it is the very worst aspect of the illness.  Almost every other ME/CFS sufferer has at one time or another been referred to a psychiatrist, after being told dismissively that “there is nothing physically wrong with you.” 

Only in the last few years has the medical establishment changed its response for the better, although there is still disgracefully little research funding for a disease that affects over one million Americans.

While my own experience has been far better than the norm – thanks to my excellent pysicians at Northwestern’s Feinberg School of Medicine – I have decided that I need to “out” myself as an ME/CFS patient.  Too many employers, insurance carriers, schools, and physicians have failed to recognize the crippling nature of this disease – because “everyone gets fatigued” – and that is not going to change unless we are willing to acknowledge and talk about it openly.

Sometimes, sick people need respect more than anything else.  While that has not been a problem for me, the profound misunderstanding of ME/CFS has added unnecessary suffering to the lives of far too many people.  If anything, I have been relatively lucky.   I cannot travel, exercise, attend evening events, walk more than a hundred yards, or concentrate for long periods of time – but  I have otherwise been able to lead a productive and relatively normal, if limited, life.  ME/CFS sufferers with less support and fewer resources have found themselves unemployed, impoverished, and abandoned. 

 My only purpose in writing is to broaden public understanding of ME/CFS, so no need to get in touch with me (but please feel free to ask any questions).  If you are interested, you can read about the CDC’s frustrating history of  ME/CFS research neglect here; the latest research initiatives at Stanford and Columbia are here and here, respectively; and you can read more about Hillenbrand’s ordeal here, here or here.

Comments

[Orin Kerr]

Thanks for blogging about this, Steve. It's appreciated.

[Eric Muller]

Steve, bravo. This is courageous. Would that we all had the courage and confidence to be this candid.

[dupednontraditional]

This ailment, unfortunately, is a "real" thing, as I have seen those close to me deal with it for years. It is certainly life-affecting, but since it does not lead to abject debilitation in many cases, many folks dismiss others suffering from this as "lazy whiners," unfortunately. Hopefully, one day, just as "hysteria" was a catch-all for a variety of now-better-understood mental ailments, ME/CFS, fibromyalgia, and the like will be shown to be a series of better-defined aliments which, in turn, will lead to more targeted treatment regimens.

Like many things, people don't know what it's like unless they have walked a mile in the other person's moccasins, or whatever metaphor one likes to use.

[Christine Hurt]

Thank you for your post. I hope others are comforted by your candor.

[Miriam Cherry]

Steve, thanks for posting this. As someone living with a chronic illness, thanks for your courage & strength.

[Mark P. Yablon]

I had a client on a disability claim. It took awhile for the company to approve the claim, but it ultimately paid once the doctors knew how to properly diagnose the condition. I wish you well!