Ms. Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or C.F.S.
The illness, a devastating and little understood disorder, is characterized by overwhelming fatigue and various nonspecific symptoms like muscle pain, memory problems, sore throat, swollen lymph nodes, achy joints and unrefreshing sleep.
CFS has been a mysterious disease since it made its appearance in the 1980’s. I was particularly struck by the fact the author Laura Hillenbrand suffers from this debilitating syndrome.
According to the NYTimes it has been a long time in coming but this illness may just be starting to be taken seriously since an advisory panel suggested the FDA ban blood donations from people with a history of CFS. This was done because there are some viruses linked to CFS and the panel was concerned about their spread via blood transfusions.
CFS is a condition of severe fatigue that is not relieved by rest, its cause is unknown at this time. It is has been long suspected that it is related to the Epstein-Barr Virus or associated with inflammation of the nerves related to an immune response of some type.
Oddly it is more prevalent in women between 30-50 years of age.
The CDC has this to say about CFS and its symptoms:
Symptoms of CFS
The primary symptoms of CFS are severe fatigue, weakening that is not improved by bed rest and may be worsened with physical or mental activity. It is an all-encompassing fatigue that results in dramatic decline in both activity level and stamina.
The fatigue of CFS is accompanied by characteristic symptoms lasting at least 6 months. These symptoms include:
self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
sore throat that’s frequent or recurring
tender cervical (neck) or axillary (armpit) lymph nodes
multi-joint pain without swelling or redness
headaches of a new type, pattern, or severity
unrefreshing sleep and
post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.
The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including irritable bowel, depression or psychological problems, chills and night sweats, visual disturbances, allergies or sensitivities to foods, odors, chemicals, medications, or noise, brain fog, difficulty maintaining upright position, dizziness, balance problems or fainting.
There is a CDC CFS Toolkit for people with the syndrome. It is a helpful resource for clinical care. It includes diagnosis criteria, along with treatment and management information.
A few years back, I had a therapy patient who suffered from CFS. She was a very emotionally and physically depleted woman in her early 50’s. She developed CFS suddenly in her 30’s after having completed law school. She was never able to practice law and had to go on public aid to survive.
She had numerous complaints including allergic reactions to chemicals in her environment and air pollution. She was frequently cold and carried a blanket with her even in the summer. She rarely went out and she had no friends or support except for her elderly mother. It took all she had to get out to her doctors’ appointments and therapy.
It was this woman that made me realize the utter devastation this illness takes on its victims. CFS has no mercy and strikes with a vengeance. Here was a professional woman who could hardly take care of herself and whose life had been forever changed almost overnight.
Laura Hillenbrand talks openly about her battle with CFS and has a wonderful supportive husband who helps her with day to day life. Somehow she has found the inner strength to work within the confines of her illness.
We need more people like Laura Hillenbrand who suffer from this devastating syndrome to speak out so that the public becomes more aware of CFS.
Hopefully, then we will see more steps taken to find a cure or at least a remedy for CFS’ debilitating effects on those that it strikes.