CFIDS Lobby Day 2005
CFIDS, the acronym for Chronic Fatigue and Immune Dysfunction Syndrome, is a very serious, complex and debilitating illness that affects the immune system, the neurological system and the endocrine system. Most people with CFIDS are functionally disabled. Many are bedridden.
I didn’t know what to expect from Lobby Day, or rather, I expected the worst. I’ve spent the better part of two decades studying politics and my previous experience with hands-on advocacy was a frustrating two years attempting to foster human rights education in Russia. I fully expected to spend all day in Washington listening to excuses and talking to a bunch of cardboard cutouts that believed they had better things to do than feign concern, much less try to understand the way this illness is destroying their constituents lives.
I was wrong.
Legislative assistants, legislative directors, members of Congress. They listened. All day.
I don’t know how well they understood CFIDS – and isn’t that the point? We don’t understand CFIDS, which is why we need greater funding for research. But I do know that by the end of the day, whether they wanted to or not, the people we spoke to were compelled to contemplate and understand what CFIDS has done to more than 800,000 Americans. At the very least, the individuals we spoke to understood that CFIDS is a serious illness, regardless of how little the name does to get that point across.
Rather than leaving me further disillusioned, the experience of Lobby Day gave me hope. Over the past decade, the CFIDS Association has made significant steps forward on behalf of the steadily increasing number of individuals that suffer from this illness. It was reassuring, even exhilarating at times to build on these steps, to move the process of CFIDS awareness and research another step further.
We still have a long way to go, but forward movement is always good and should never be underestimated. I never truly understood that until I participated in Lobby Day and saw firsthand the changes that can occur, however slowly, when a group of people steps forward to communicate what they feel and believe.
The event had another impact on me personally. For the first time, I was working side by side with a group of people who had lived the same nightmare I have lived for the past 13 years. I’ve worked and communicated electronically with people with CFIDS, but it was a completely different experience to work together in person to try and push advocacy and research forward. It made the illness seem more real and frightening to me than it ever has, but at the same time the experience empowered me.
With the exception of a few periods of time when I’ve been severely disabled by CFIDS, for the most part I have remained functional. In this respect, I am one of the lucky ones. I’m up and about and I’m able to work. Granted, I can’t function at my full potential, and this trip brought that point home harder than ever. To walk the halls of Congress and remember that at one time I had wanted a high-level political career made me realize my limits and my losses. Twenty years ago, before I became sick, I went to Washington to see my future. Twenty years later I was back, and my future seemed to have dissolved somewhere in the hazy past of illness.
The experience might have been depressing. Instead I found it empowering. I discovered that despite everything CFIDS has taken away from me, I was still there in the center of politics, advocating for a cause I believe in very strongly. And people were listening. It was the same future I’d imagined twenty years before. It just took a different shape. Arguably a more powerful shape, because instead of being involved in government just to be involved, I had a reason to be there. I had a message to get across. I had a reason for believing the system would work on our behalf. And I saw the system working better than I imagined it could.
The trip might have exhausted a healthy person. I returned home needing three days of solid rest. When I emerged from my cocoon, I felt freer than I had in a long time. Before I went to Washington, my attention was focused on proving what I could accomplish despite the illness. Now I can accept that I don’t have to prove anything. I have a serious illness and I’ve had it for years. In some ways it’s taken away the best years of my life. Instead of grieving for my losses, I’m free to move forward. I have CFIDS and I am still functional. Therefore I have the privilege of playing an advocacy role at the forefront of an emerging illness. Who gets an opportunity like this?
Could I have envisioned a more comfortable future for myself in government? Absolutely. Could I have envisioned a more powerful role? Certainly.
Could I have envisioned a more effective way to be a part of something that encompasses and perhaps defines the medical future of this country?
I’ve always believed that those who succeed are the ones that feel they have nothing left to lose and decide to move forward and see what’s possible. I feel this way, as do many others with CFIDS. Therefore I know the day will come that we will succeed in our effort to create greater awareness and find a cure. I am thankful to be a small part of this promising endeavor, and I hope that this was the first of many Lobby Days in which I’ll participate.