1.
I've been thinking a lot lately about the disbelief surrounding CFS, and the effect it has on us patients. This is changing! But for the past 25 years, CFS patients have been ignored, patronized, and psychologized (this is a word) by the medical establishment and the media. We've all probably had the experience of being told our condition is psychological, not somatic, in origin. Even if we have good doctors and a supportive family, there's still an atmosphere of skepticism surrounding CFS, where the proof is on the patient that we’re sick and not crazy. The insidious thing, at least for me, is that it's hard not to absorb this disbelief and start disbelieving ourselves.
I love medicinal science. It can do amazing things, and I'm holding out hope that it will do amazing things for CFS. But it's also badly organized, immorally profit-driven, inaccessible, and arrogant. Because scientists don’t understand this illness yet, they assume it must not be real. Even if some doctors believe us, most can’t help, and so we go on to alternative medicine.
I also love alternative medicine. Its practical advice and holistic approach have helped me immensely. Nutrition, Qi, herbs, and considering the effect of mental health on physical health are nothing but super-great. But there is an undercurrent of hubris in the alternative medical field as well; there is an idea that just because mind and body are intertwined, the mind must have power over the body. We must be able to heal ourselves every time.
This kind of thinking conflates physical health and spiritual growth, and tends to see the illness as a metaphor. Sore throat? Maybe you’re not expressing yourself. Cataracts? You must lack vision. And Chronic Fatigue Syndrome!? Who knows what that’s all about, but you must be doing something wrong.
If there is a dichotomy in Western medicine between body and mind, there’s also a dichotomy in alternative medicine between the mind/body connection and the fact that physical illnesses need physical treatments. No one would treat MS or AIDS like that, but because the etiology of CFS is unknown, the crackpot theories fill the void. Once again, the patient is told that her illness is not real, this time under the patronizing guise of spirituality. Once again, the victim is blamed.
Blaming the victim is a pretty universal concept, sadly. We don’t want to live in a chaotic world where bad things happen to people who don’t deserve it. That would be scary! It makes us feel better to think that a person with a debilitating disease that no one understands is somehow responsible for it. This phenomenon has only been made easier by dubbing CFS the “Yuppie Flu.” Actually, just like most other diseases, poor people and people of color are at higher risk.[i]
The truth is that illness is a force of nature. We do what we can to prevent and treat it, but ultimately it’s out of our hands. The very first thing we need to do is accept it. This is the key to sanity and the first step toward healing. But acceptance is hard when you are supposedly the cause of your own suffering. I know I ran myself ragged for years trying to prove that I didn’t want to be sick. I think a lot of us do that. We waste our energy and money, we rack our brains wondering if there are deep dark subconscious forces undermining our lives. We push ourselves harder, and make ourselves sicker, or we lose trust in ourselves completely.
Acceptance is radical. It means we embrace our lives, every aspect of them, even the horrible and scary parts. It's so hard to say "Yes, this is my chronically ill life, and I'll take it by the balls anyway, and make the most of it." But what choice do we have? The hippie doctors say that illness is a spiritual defect. That's not true. But illness can be transformative, if we make it so. It can put our life in sharper focus, force us to abandon the bullshit we don't have the energy for, awaken our compassion, make us treasure our family and friendships. I won't go so far as to say illness is a gift; there are a lot of other ways to become a better person. When I haven't left the house in a month, "personal growth" seems like a particularly bitter consolation prize. But still, we don't have a choice. Let's learn from this experience, let's embrace it as much as we can.
And that is almost impossible to do when you are worrying that any positivity about being sick, seeing any possible gains from it, might be part of an insidious subconscious attachment. "Do I want to be sick because I want to grow?" No! Don't listen! Something horrible and beyond our control is happening to our bodies, and staying postive about is an incredibly brave choice.
So let's change the dialogue. Like I said, I really see it happening. I hope people getting sick now are spared the years of confusion and misunderstanding that so many of us went through. It’s sad that we get excited about simply being believed about the legitimacy of our illness, but after 25 years, it’s about time. It’s the first step towards a cure.
Acceptance is radical. It means we embrace our lives, every aspect of them, even the horrible and scary parts. It's so hard to say "Yes, this is my chronically ill life, and I'll take it by the balls anyway, and make the most of it." But what choice do we have? The hippie doctors say that illness is a spiritual defect. That's not true. But illness can be transformative, if we make it so. It can put our life in sharper focus, force us to abandon the bullshit we don't have the energy for, awaken our compassion, make us treasure our family and friendships. I won't go so far as to say illness is a gift; there are a lot of other ways to become a better person. When I haven't left the house in a month, "personal growth" seems like a particularly bitter consolation prize. But still, we don't have a choice. Let's learn from this experience, let's embrace it as much as we can.
And that is almost impossible to do when you are worrying that any positivity about being sick, seeing any possible gains from it, might be part of an insidious subconscious attachment. "Do I want to be sick because I want to grow?" No! Don't listen! Something horrible and beyond our control is happening to our bodies, and staying postive about is an incredibly brave choice.
So let's change the dialogue. Like I said, I really see it happening. I hope people getting sick now are spared the years of confusion and misunderstanding that so many of us went through. It’s sad that we get excited about simply being believed about the legitimacy of our illness, but after 25 years, it’s about time. It’s the first step towards a cure.
[i] Dinos, Sokratis; Khoshaba, Bernadette; Ashby, Deborah; White, Peter D.; Nazroo, James; Wessely, Simon; Bhui, Kamaldeep S. (2009). "A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping.". International journal of epidemiology 38 (6): 1554–70. doi:10.1093/ije/dyp147. PMID 19349479.
