I live a double life. By day I work full-time at a great job and appear young and healthy. By night I am someone who suffers from chronic illness, has trouble walking up a flight of stairs, and is usually too tired to do anything other than watch TV and go to bed. I know I am one of the "lucky" ones with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) because I am able to work...though I haven't always been this functional.
I have been sick with CFIDS (also called Chronic Fatigue Syndrome) for my entire adult life. My health started to deteriorate slowly when I was 18 and got much worse from 22 to 24. When I was at my sickest, at ages 24 to 26, I was pretty much housebound. I slept 16 to 20 hours a day and could not hold a full time job. I had constant sore throats and low-grade fevers, caught everyone's cold/flu/bacterial infections regularly, was exhausted all the time and felt even worse after exercising, and just could not live a normal life. I'll talk about all my symptoms and health problems in greater detail in future posts.
Now that I am better off (though far from being completely well) I do what I can to be an advocate for all the CFS patients who are still too sick to leave their homes. For the past few years I have participated in the CFIDS Association's Lobby Days, which involved traveling to Capitol Hill in Washington, DC to meet with senators and congressmen and/or their health liaisons.
In April 2009 my husband and I traveled to the Centers for Disease Control and Prevention (CDC) in Atlanta, GA to give public testimony and comment on the CDC's 5-year strategic research plan proposal. Most recently (this week, in fact), I traveled to Washington, DC to speak at the CFS Advisory Committee's meeting at the Department of Health and Human Services (DHHS).
I've included my (slightly edited) comments from yesterday's meeting below (each person was given a maximum of five minutes to speak):
Thank you for having me.
My name is Alyson, and I flew in from Texas to be here. I am also happy to have my parents and cousin here to support me.
I am a CFS advocate and patient, and I do what I can to give a face and voice to the many CFS patients who are too ill to leave their homes. I'm 30 years old and have had CFS for my entire adult life; though I've only been officially diagnosed since 2005 because it took more than four years and four doctors to finally get diagnosed.
My original plan for today was to come and sit in on the entire advisory committee meeting, but my plans were foiled by my disease. This morning I woke up, ate breakfast, then took a five hour nap. My disease is a great frustration. This weekend my husband and I celebrated our fourth anniversary at Disneyland. The ONLY reason I survived the weekend is because my husband pushed me around in a wheelchair. I'm not going to explain how this disease has affected my marriage or quality of life right now because it will take more than five minutes.
I am here today to give you a sense of urgency. Not enough progress has been made in the education of physicians and other health care workers. The doctors I went to before finding my current one were skeptical at best and completely dismissive at worst when I proposed the possibility of my having CFS.
More needs to be done more quickly on all fronts -- educating health care professionals and the public, research on the disease including diagnosis and treatment. I've already lost my 20's; I don't want to lose my 30's. Please use your power and influence to help us move forward.
I'm too tired to write anything more, but I plan to write again soon (probably tomorrow)! Thanks for reading.