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WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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John Kennedy
Neptune Beach, FL


I am 43 years and my story is one of an airline pilot who was happy and content with life, physically, spiritually, and financially. Then in the period of three days, I lost the ability to walk more that 20 feet, climb my own stairs, breathe without effort, and to do any other thing that required energy. I was sleeping 20 hours a day and couldn't even fix my own meals. Now my life is one of measurement and balance. I intentionally pace my every step to avoid walking too fast. I fold only three towels at a time before I sit down with my arms at my sides to rest, and recover. I always wear sunglasses to avoid migranes. I do nothing at all for two days before I get to go to the grocery for three or four items. I rest all day so that I can spend a few minutes talking to my two girls after they get home from school, without getting angry or frustrated or confused. I turn off the TV when someone calls on the phone because I cannot hold a conversation with any noise in the room. I sometimes am required to face the corner or close my eyes to respond to a question. I will not remember what you said to me ten minutes ago. If you think my illness is serious, you are right. It has affected almost every facet of my life. My physicians were relieved to rule out MS, brain cancer and several other deadly diseases. Unfortunantly they are like most non physicians when it comes to the disease I have. They simply just don't believe it is so devastating. I have Chronic Fatigue Immune Disfunction Syndrome. What's in a name? How did you feel about my illness before you knew it's name? My biggest problem with having a disease that so little is known about and with such a terribly inaccurate name is getting anyone to understand that it devastates your life. The struggles with relationships and the average two year wait for social security benefit approval(if ever) just add to the frey. So I measure and pace myself, all the time hoping for a cure. This is serious. I didn't ask for it. I can't ignore it. You don't believe it. That's my experience.

YOUR STORIES
Karin M. Amour, Fibromyalgia
Lyssa Bode, Chronic Fatigue Immune Disfunction Syndrome
Frankie Campling, Chronic Fatigue Syndrome
Laura Cerasuolo, Fibromyalgia/Myofacialsyndrome
Karen Cerio, Fibromyalgia
Rhonda Dewinter, Various Immune Diseases
Jennifer Embree, Fibromyalgia/Raynaud's Syndrome
Lynne Enman, Turner Syndrome/Various
Fibromyalgia Patient, Covington, KY
John Kennedy, Chronic Fatigue Immune Disfunction Syndrome
Susan Larick, Fibromyalgia
Melissa Lawler, Fibromyalgia
Irene Leeder, Fibromyalgia/Various
Cait Lommel, Pseudotumor Cerebri
Jennifer Munn, Chronic Lyme Disease
Robin Poole, Fibromyalgia/Lupus
Pam Schmidt, Phenylketonuria
Lynn Tonoli, Various
Various Patient, Haughton, LA
Suzanne Witt, Muscular Dystrophy/Fibromyalgia

ARCHIVED STORIES

WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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