Kathleen Marshall is a working woman with a family and many interests including dancing, carpentry, biking, and being an all-around doer and liver of life.
So it seemed particularly unfair when she was diagnosed with chronic, invisible illness as a newlywed and young mom who had just completed her nursing degree and begun a brand new job as a nurse.
Marshall had to learn to be on the receiving end of the nurturing she’d been planning to give as her career. Learning to live with Chronic Fatigue Immune Dysfunction Syndrome, a.k.a. Myalgic Encephalomyelitis, has led Marshall to redefine herself and her life a few times already.
“I was the was a woman in absolute control of her life. Now I have to cede control, but I am a much more gracious human being,” Marshall says.
“Chronic Fatigue Immune Dysfunction Syndrome/ Myalgic Encephalomyelitits (CFIDS/ME) is a diagnosis of exclusion. For those with adequate health insurance obtaining the many exclusionary tests can be relatively affordable, depending on deductible and co-pay amounts required by the policy. However, for those with no health insurance the costs of diagnosis can be devastating. In either case, finding a doctor who accepts and is knowledgeable about the disorder is critical. There are doctors who consider themselves specialists in CFIDS who do not accept insurance payments and who recommend expensive treatments from both traditional medicine and alternative medicine approaches. I have never chosen to see a doctor who does not accept insurance. To find a doctor in your area a good resource is FM/CFS/ME Resource at www.fmcfsme.com. This organization has vetted doctors in 80 countries. Even little old Arcata, CA is on the list. Unfortunately, the one local doctor listed, who was my doctor in the past, has a closed practice and is not accepting new patients. There are, however, doctors listed in nearby areas such as Novato, San Francisco, and Redding. Even if your doctor is not on that list, he or she may have some knowledge about CFIDS/ME and may be willing to coordinate your care with a specialist outside of your geographical area." For those who suspect they may have CFIDS/ME, use one or more of the following resources to learn about CFIDS:
- The Centers for Disease Control added the definition of and diagnostic criteria for CFIDS/ME to their recognized disorders list in 1994.
- The Solve CFS organization provides general information and funds research into CFIDS/ME.
- The Mayo clinic also provides valuable information for patients and their doctors.
"Finding a good doctor to help guide symptom management including traditional and alternative therapies, working with therapists to develop coping strategies and affect behavior changes, being patient with yourself, maintaining optimism that you can still live a fulfilling life, and nurturing your relationships with family and friends can help you through the desperation phase into restoration and acceptance.”
Marshall hopes that sharing her story will make it easier for us to understand and support our sick friends who do not look sick, and for those sick people to find solace. “You have to accept where you are at every moment, even if where you are is not where you want to be.”