When I describe my illness as an "immune deficiency" people sometimes think I have HIV/AIDS. I understand why that confusion happens. But I've never been able to explain it, because I don't have HIV so I can't speak to what it's like.
I cried when I watched HBO's "The Normal Heart" back in May. The story is about HIV/AIDS in the 80's, but it felt like my story. Some of the symptoms are the same, but it was more than that. Their struggle to be recognized is mine. Their fight to get real research done is mine. Much like HIV/AIDS then, CFIDS is still--now--ignored by much of the medical community. The funding toward research is a joke. And many people do not take the disease or patients seriously. By the end of the movie I was enraged thinking of those similarities. Am I three decades away from seeing a movie about the journey of CFIDS sufferers?
Through my sad and angry tears, I was able to choke out, "It's not fair! They get to die at least; we have to live like this forever." I said that to Kevin privately and it wasn't a statement I thought I'd share widely. I don't mean to trivialize something so painful and shattering as AIDS. However, the sad truth is that I, along with millions of other chronically--but not terminally--ill people have learned one of life's deepest secrets. It is this: There are things worse than death. Death can be a reprieve from horrific, endless, incurable pain. Some diseases have the ability to strip every bit of "quality of life" away from a person, but leave them aware of being alive without really living. We fight and hope and pray and wish for cures. We try every experimental solution. We don't want to die; we want to actually live. But we know that if given a guarantee of life staying this way until an old age death or dying young from it, we wouldn't choose decades like this. Death isn't scary, living like this forever is.
So why did I decide to tell you about that "it's not fair" statement, the one that I was so sure I wouldn't share publicly? I came across a few quotes from medical professionals qualified to compare HIV/AIDS, and just like that my feelings were validated...
"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."
"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."
http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=70:about-cfs&Itemid=721
Crazy, right? So yeah, it's kinda a big deal. It's pretty serious. Let's move on to Chronic Illness Cat and one of the classic spoonie-life struggles.
This is what some days look like:
But, why? Why does my face look like this? Why do I have black eyes? Why do I have a rash? Why is one eyes partially swollen shut? Whyyyyyyyyyyy?
(I woke up like this.....lol, Queen Bey.)
This is what I do to hide it, if I have the energy or give a damn, and it does result in the inevitable "why are you wearing so much make up?":
(You can still see the tired, but at least it's a little disguised.)
And this is humiliating and infuriating:
Oh btw...
The idea and motivation [to get over myself] to use a wheelchair came from this wonderful article: http://m.huffpost.com/us/entry/5548406
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