Interview with Martha
By Carole LaMond
In 1993, Kilcoyne, then 38 and three months pregnant with her second child, caught a
particularly nasty flu virus that was going around her office. Her co-workers recovered, but Kilcoyne remained exhausted, achy and ill. "It was the kind of fatigue, if you are holding a glass of water in your hand, you are afraid you are going to drop it," said Kilcoyne. "You don’t have the strength in your body or in your hand to hold the glass up."
Kilcoyne was eventually diagnosed with CFS, a little-understood disease that at the time was often dismissed as ‘yuppie flu,’ and treated as depression rather than a real disease. CFS reduced Kilcoyne’s cognitive ability to "brain fog" most days, and caused muscle aches and weakness that made it difficult to even lift her arms to shampoo her hair. "I was basically treated like I had some depressive disorder and there was nothing that could be done, but I am an upbeat, ready-to-go, Type A person," said Kilcoyne. "And like a typical Type A person I tried to push through it, which is the exact opposite of what you should do. Fatigue is a message: ‘You aren’t well, you need rest.’ "
CFS is a "wastebasket diagnosis," said Kilcoyne, made after testing for and eliminating every other illness with similar symptoms. "Most physicians wash their hands and say, ‘Good luck,’ because there is no known treatment program," said Kilcoyne. "It’s important to go to a physician who takes you seriously and treats you for a disease. When I got sick you couldn’t find anyone who did. Now there are a lot more physicians who understand CFS is a real disease, but there aren’t enough of them yet." Kilcoyne spent two years trying to "tough out" the disease until she and Voyta, based on cause-and-effect observations, worked out an eight-step protocol to treat her CFS.
Over the next two years Kilcoyne focused on nothing but getting well. A typical 12-hour day, from rising at 7 a.m. and going to bed for the night at 7 p.m. included two two-hour naps and mild activity. A shower and getting dressed for the day, with frequent rest breaks between each step, took her an hour. "It took about a year for me to really see some improvement and then it took another year for me to slowly take on things," said Kilcoyne who added that a simple trip to the grocery store could exhaust her for days afterward. "And I would drop straight back to a rest state if I experienced a problem."
The eight steps in Kilcoyne’s recovery are simple, and include advice on how to keep an activity diary and how to cope mentally with being a patient, but ones that CFS sufferers often ignore. The power of Kilcoyne’s program is the narrative she provides about her own struggles and success.
Defeating her disease was a significant turning point in her life, yet when Kilcoyne got well the last thing she wanted to do was to talk about CFS. "Everyone tells you it’s in your head. There is all the stigma and the judgmental looks, and even once you’re cured, if you talk about it you still have the same stigma," said Kilcoyne. "So you don’t talk about it." It was only when a friend told Kilcoyne about another friend with CFS that she quipped, "Been there, done that." Kilcoyne offered to talk with the patient and share what she had learned from her own bout with the disease. "I spoke with the woman and then I thought for about six months about writing the book," said Kilcoyne. "That little voice kept saying, ‘You’ve got to share what you know.’"
"Regaining my health was the hardest thing I’ve ever done. It was so hard being so sick and not being recognized as having a ‘real’ illness, and having to get well on my own," said Kilcoyne. "I had to pass that wisdom along."