Sunday, June 07, 2009

On Being an Advocate for Chronic Illness

If you are familiar with me, then you know that I'm a member of the "BRC Army" - a group of people who advocate for CFS/ME. Right now the organization is run by a tightly-knit group of 6, who found each other via Twitter and Facebook in April and May of this year. Unofficially, we are the "Board", the ones undertaking a flurry of activity, despite our CFS/ME and (two of us) Fibromyalgia. One of our core members does not have CFS/ME, but was close to someone who did, and suffers from migraines. Everyday we work together, we are inspired by each other's dedication and stamina in the face of our pain and suffering. We regularly admonish each other for not getting enough sleep, not eating enough, not having enough fun. We monitor each other's health and support each other in every way possible over the internet. None of us have ever met in person, and yet we've formed a strong bond as friends and co-conspirators.

I've spoken before about how big our vision is, and credited our founder, Andrea, for keeping that dream alive and expanding. I've written on my personal blog about how I've been inspired and found purpose in taking this opportunity to do good in the world. And yet, being a part of this campaign is more than that for me. As someone who has always seen her life as a journey (a spiral one!), I see my participation in this cause as another step in my self-development. I've already gained so much confidence in my abilities - to write, to have great ideas, to help others, to listen, to share, to encourage. This is in large part due to the supportive and understanding nature of the group of women I am blessed to be working with. We all share the same desire to live our lives for more than ourselves, our families, even our small communities. We share the desire to "save the world", or at least to make a large change in it. We are doing so by changing the way people see ME/CFS and the people who suffer from it. We are changing the way these people see themselves. By extension, we hope to change the world for all people with chronic illness, to facilitate recognition, compassion, acceptance and real action towards curing these devastating diseases.

It is my belief that the current 'way of life' in the civilized world plays a big part in chronic disease. This in no way infers that these diseases are due to "stress" or lack of coping skills. What I mean is that we are taught and expected to push ourselves to the brink of exhaustion. We are conditioned to believe that being sick, or even just needing more than 6 hours of sleep a night is a sign of weakness. That anyone who cannot "produce" is worthless, a burden on society and their families. I struggle with these beliefs every day. I struggle with the guilt of being sick - even though it is not my fault that I am so. The chronically ill do not need to deal with these feelings on top of their already overwhelming symptoms, but that is just what stigma forces us to do.

Being an 'advocate' means I have a responsibility to treat myself and everyone around me otherwise. It means I will stop and listen to anyone who needs to talk about struggling with their illness. It means I can not turn away, bury my head in the sand, or tell myself that it's somebody else's problem. I have chosen this path freely, but I was not quite prepared for the responsibility, and I am still learning what it means and how to deal with it. Daily I am given new challenges and they frighten me, but I cannot bring myself to say no, because this work must be done, and I am needed. And guess what? I have, with the help of my colleagues and friends, risen to each challenge. I have done what I considered was beyond my limits. I continue to prove to myself that I can make a difference. I am believing in something human-powered for the first time in my life. My experience with advocacy is validating me and empowering me every day. It is a joy to be doing this work, and to have found a place where I finally belong, where I am understood, and needed, respected and even admired. It is a joy to find myself being inspired and inspiring others daily. It is a joy to finally use my inborn talents to do something important.

It is not wrong for me to feel proud of myself, as I was taught growing up. It is our right as human beings to do meaningful things with our lives, and to experience the emotional rewards that come from succeeding at it. Advocating for chronic illness allows me to do something good for myself as well as the world. It allows me to feel like I deserve my long sleeps, my breaks, my feelings of pride and worth.


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.