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.
My advice for those who suspect they may have CFIDS/ME is to use one or more of the following resources to learn about CFIDS:
www.cdc.gov The Centers for Disease Control added the definition of and diagnostic criteria for CFIDS/ME to their recognized disorders list in 1994.
www.solvecfs.org The Solve CFS organization provides general information and funds research into CFIDS/ME.
www.mayoclinic.org The Mayo clinic also provides valuable information for patients and their doctors.”
Because of her refusal to be defined by her condition, not all of Marshall’s friends and colleagues have been aware of the illness that makes everything she does require a little more effort and a lot more recovery time. And of those who do know, not all of them understand what it means. Indeed people with invisible illnesses struggle for understanding from friends as well as medical professionals.
“People with unexplained illness, even after diagnosis, are often desperate for help,” Marshall says. “Don’t let anyone get away with implying that the underlying cause is your fault. You did not incur the wrath of the gods, or the universe, or whatever, because you partied in your youth, or didn’t exercise enough, or ate animal products, or have had a lot of stress in your life. While all of those things may have health consequences, this illness is not karma or just desserts. Some people recover completely with and without major lifestyle changes, while the rest of us manage our illness to the best of our abilities. Time along with new time management skills and coping strategies have been most helpful for me. As I was just 37 when I was diagnosed it was very important to me that I do my best to keep myself as healthy as possible so that I wouldn’t develop co-disorders. I was determined to keep my heart and other systems as healthy as possible. I was also desperate for a cure. In that desperation I tried just about everything recommended to me; Chinese herbal treatments, supplements (and believe me there are a ton of them out there recommended for energy revival to sleep), acupuncture, crystal healing, hypnotherapy, muscle-testing, allergy diets, a gluten-free diet, heparin shots, pitocin shots, etc. Most of those things provided a placebo effect for a short period of time, but the effects did not last and the efforts were not only financially expensive they were emotionally expensive. 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.”
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