Several times this year I have attempted to bring awareness to the patient activist political push to get CFS/ME research funding to my family and friends through my Facebook account. Each time I fretted over my word choice, and anxiously watched the engagement after I posted. Because I know that the people in my life don’t exactly care that much.
If they’re reading this they’re already protesting that that isn’t true and of course they do and they love me and yada yada yada. Of course they love me. Of course they care about me.
But they don’t care about chronic fatigue syndrome, not really. I know this. Because no one has ever asked me about current research. No one has ever asked me if there is anywhere that I donate that they could look into contributing to funding. No one has ever asked me what color ribbon or what month or what day or what anything is used for CFS awareness.
People are not engaging with chronic fatigue syndrome the way they engage with cancer, diabetes, ALS, AIDS, and other conditions that are brought up frequently, either in proportion to their effect on the population or more so. Chronic fatigue syndrome is not rare; between one to four million Americans alone are thought to have it, according to the CDC. It is not a low-impact condition; by definition it has to effect a sufferer for 6 or more months. In light of the facts of the condition, it does not make sense that chronic fatigue syndrome gets almost no real research funding, and is not regarded as a disease on par with those listed above in public thought.
It doesn’t make sense that my family and friends don’t care about research funding.
I’m not mad at anyone. There are many factors that cause this apathy towards the condition. But I am worried that if people don’t care about chronic fatigue syndrome nothing will change, even with the hard work of patient activist groups lobbying for research funding. And if nothing changes, there is no hope.
Arguably the most important factor to creating a sense of urgency toward curing CFS is for the patients themselves to broadcast the reality of the condition. I have mentioned in a previous post that I contribute to the diminishing of my own condition on a regular basis. If I am not forthcoming about the severity of chronic fatigue syndrome, how can I expect the people around me to equate it with what they consider suffering? Every time I say I am OK when I am not OK, I make it harder for my loved ones to understand that it is a matter of hope for life for me and a million (or several million) others when they sign a petition for dedicated federal research funding.
Sufferers of CFS may be more likely than the general population to die by suicide, a fact I learned only this summer when my Facebook newsfeed started to fill with memorial posts to patient activists who recently died. Hope is essential. Research is hope.
I understand that I am part of the problem–I am trying to be more honest, because this is not just about me. I don’t want to read another in memoriam while people think chronic fatigue syndrome is simply an inconvenient part of my life.
Another important factor is one I cannot control, a cultural narrative that details how sickness is supposed to go. It goes like this: you get sick, you fight it with treatments, you get better or you die. That’s how it goes. If you don’t fit in there, then the world doesn’t really know what to do with you. When do they bring the casseroles? If you don’t go bald or use a wheelchair, or have an outward signal of your struggle, how do they know you’re really fighting? CFS does not fit the narrative of illness so it can feel uncomfortable. People can be uncertain about how to engage with it, and the people who live with it, so they ignore it.
There is no easy solution to this problem. I have to ask that my family and friends try. I have to ask that the family and friends of those with CFS and other conditions that don’t fit the mold try harder. Risk not doing the right thing, or a socially unacceptable thing, and do something. This is uncharted territory, my friends, because no one has bothered to set forth rules for caring for chronically ill loved ones before. (They used to lock them away or just let them die. We don’t have to do that anymore. Donate to research.)
Cancer has something that CFS doesn’t have in that everyone I have ever met is afraid of getting cancer and no one I have ever met has expressed any fear of getting CFS. I understand the fear of cancer. I do not understand the lack of fear of CFS. I used to take it personally when I was younger, like people thought I was weak and that is why I was sick and they weren’t. Now I know it’s because people are irrational and silly (no offense). People are scared of cancer because they hear about it more, but if they’re going to live in fear they should live in fear of CFS, too, because it can happen to anyone. While it is diagnosed mostly in women, it crosses all demographics and occurs all over the world. The causes are vague and treatments non-existent. Have I mentioned the little research funding?
The truth is I don’t know why people don’t care about chronic fatigue syndrome. And I don’t know how to make them care. My sincere concern, the worry in the pit of my stomach, is for the 12 year old girls who this year, or last year, or next year, are going to get sick and never get better. They are going to live through what I’ve been through and it won’t be any better for them. It should be better for them. We have the power to make it better for them, if we care.
What can we do to make CFS more visible? How can I help you (family/friends) understand or engage with CFS? Tweet me your thoughts @brightandweird