It has been a rough winter, no doubt about it. I’ve had flu, strep, and what now looks like pleurisy. Every time I got up, another wave knocked me down. I finally acknowledged that I had to resume my old habit of resting and pacing myself. It was hard to have to acknowledge that.
I wrote in my journal that having this illness is like being in prison: you are confined, the world passes by without you. Also, you never know when you will be violated, not by another person, but by some passing virus or bacteria.
Perhaps because that image of prison was on my mind, I found myself reading about Lori Berenson, the American political activist held in Peru for the past fifteen years on trumped of charges of terrorism in the Sunday New York Times Magazine (http://www.nytimes.com/2011/03/06/magazine/06berenson-t.html ). One of the curious things she talked about was how carefree she was when she thought that her sentence wouldn’t be commuted . At the beginning, many terrorist prisoners, like Berenson, had life sentences. “It was somewhat carefree because you didn’t have any concrete sense of the future,” she told me. In a similar way, when I was sickest with CFIDS, I also had no future. There was only the present moment, and it was, in a sense, freeing. As I got better, one of the hardest things was learning how to cope with a sense of a future, with participating in life. How to apportion time and energy? What goals were worth working for? How to re-enter the stream of life, not as I was before, but in a new way that respected my limits, but also tested them? These were and are difficult issues.
Another prisoner, Aung San Suu Kyi, recently freed from house arrest, talks almost wistfully about her house arrest. Now she is exhausted by the demands of political life; then she got up and did her yoga and meditation, and worked in her office. Then she had a sense of being in control of herself, even if she was not able to be a player in her country’s future.
I am happy to be in the world, even if to do so requires nun-like bouts of rest and saying “no” more often than “yes” to social activities. I want to forget that I have this illness, but it doesn’t forget me.
Another way having this illness is like a prison sentence is that it feels like punishment. Like Job, I search and search for the sins that have brought me to this place. Like Lori Berenson, I feel falsely accused. Like sufferers of lupus, Multiple Sclerosis, and TB before us, patients with CFIDS are often held responsible for it. 
I want to protest my innocence and be acquitted. But as the DoDo bird said in Alice in Wonderland, “There is no judge, there is no jury.” There is only the absurd world of this disease. Made even more absurd and unbearable by the lack of understanding around it. Today’s Science Times had a very good article about the difficulty of defining Chronic Fatigue Immune Dysfunction Syndrome (http://www.nytimes.com/2011/03/08/health/research/08fatigue.html?ref=science). After last month’s article in Lancet which maintained that graded exercise and CBT could improve the lives of patients with CFIDS, many people have come up to me to tell me the good news. Only the fact is, they have no idea of the complex immune, endocrine, and circulatory issues that I have to contend with, no idea of the level of exhaustion even mildly overdoing exercise can cause, no idea of the sensory overload that can catapult me into a relapse. They have no idea of idea that sitting at the computer in the time it takes to write this post means I’ll have to rest for an hour.
They have no idea. Because they have never been to prison.
Word Medicine 
Sara, thank you so much for taking the time and energy to share your perspective, a perspective I very much identify with but have repressed. Several years ago, after a series of seizures and other symptoms, I received a preliminary diagnosis of either a brain tumor or M.S. Despite the MRIs that showed a mass on my brain stem, I intuitively knew it was M.S., had even known before the symptoms started. Yet after an enormous amount of testing, the doctors were unable to find enough empirical evidence to sustain either diagnosis, so it was all written off as anxiety. Anxiety…as in, “It’s all in your head.”
Without a proper diagnosis (or adequate health insurance that would allow me to seek further testing), I have been sequestered in silence, feeling I had no right–since I have no “proof”–to claim the illness. It’s not even the lack of treatment that I care about; it’s the lack of validation and the effect that has on my efforts to explain to others why I can’t do this or that.
It’s my experience versus the doctors’ opinions. And that battle, that lack of understanding, is worse for me than the illness itself. I’m sure others might find it strange that I would long to be diagnosed with a debilitating illness; what I’m really longing for, though, is to be free from the doubt that divides me. Perhaps one day soon, if we keeping speaking our truth, word by word, we will chip away at the illusions that separate us from one another, acknowledging and accepting, instead, our shared humanity.
LikeLike
Freedom’s just another word for nothing left to lose.
LikeLike
Roxanne,
Until people are chronically ill or gravely ill, we don’t appreciate how much of illness is experienced not only in our bodies, but in the social matrix. If a disease is well understood, so are the social reactions to that disease– a case in point is cancer. We have a set of response, usually around the idea of warfare or fighting it. Now whether those responses are helpful or adequate is another issue, but the point is both the patient and the community at large have a feeling that understand the disease. I agree with you completely that the lack of understanding is worse than the illness itself. I absolutely understand that a diagnosis brings clarity from “the doubt that divides me.” An illness that is little understood invites us and those around us to blame ourselves, an inadequate but human response, that springs our need to control the chaos of illness. I think, too, that the lack of validation you talk about is in itself debilitating. Of course, doctors are trained to go on empirical evidence, yet the best ones can also make room for the both the facts that that evidence may itself miss something, and that the patient may indeed have an intuitive feel for their situation.
In the end, illness is an experience that both can’t be and must be communicated. I applaud you for your courage.
All best,
Sara
LikeLike