The stress of living with CFS can take a heavy toll on one's ability to envision a better future. Yet people with CFS must avoid the trap of false despair. Hope for recovery is essential if you are to take the steps necessary for healing.
As unbelievable as it may seem at times, there is plenty of reason for hope. According to Dr. Andrew Lloyd, CFS researcher and Visiting Fellow at the NCI's Laboratory of Molecular Immunoregulation, "Our overwhelming experience...has been that when recovery occurs, and we believe that it happens commonly, it is complete, and one can find no evidence, pathological or hematological, of any disorder whatsoever... Whatever the process is that produces this fatigue state appears to be completely reversible."1 This is supported by a study of CFS in 135 patients directed by Phil Peterson, M.D., of the University of Minnesota Medical School and Hennepin County Medical Center in Minneapolis. The results led Peterson to conclude that "Although it waxes and wanes, (patients) generally head slowly out of the woods with this illness. Recovery is... clearly the rule in the majority of patients... This is not an interminable disability. Patients do recover gradually."1
And, according to Charles Lapp, M.D. of the Cheney Clinic in Charlotte, NC, "The most important thing I can tell people is if you take care of yourself and don't overdo it, you will most certainly see steady improvement. That is almost always the rule..."2
For most people, the time from onset to recovery ranges from 24 to 48 months, though it can be much longer for some. There are important differences among individuals which account for this variation. These include genetic constitution, supportive medical treatment, ongoing stresses, and perhaps even different strains of the agent(s) triggering the syndrome.
Two factors that seem to predict recovery time are the severity of symptoms at onset and psychological adjustment to the diagnosis."Severity of symptoms at onset" reveals your unique vulnerability to this particular disease process. The more severe the initial symptoms, the more likely you are to have a harder time overcoming them.
"Psychological adjustment" refers to your willingness to accept and work within the limitations imposed by the syndrome, develop a healing relationship with yourself, and make changes in how you live that will support your recovery.
We can learn a great deal about this from those who have experienced the recovery phase. As Tina tells us, "There were signs all along when I was getting sick. I would spend four or five days in bed, but I never trusted myself, I would always push myself. Part of me was telling me that something was wrong, that I had to stop and do something, but I didn't listen.
"What I've learned now is that I always have to listen... I can tell when I'm vulnerable because I get a mildly sore throat. I recognize it and I nip it in the bud before it can get established. The shift for me has been in admitting something is going on rather than being angry or denying it. Then I take steps to prevent relapse. If there is any stress going on, I just get myself out of it. I start taking better care of myself, get extra rest, and I can usually just skip past it. I rarely end up in bed anymore..."
As Tina and many others have shown, you can learn to work withyour own recovery process. Take heart recovery happens.
References
1"Chronic Fatigue Syndrome: Diagnosing the Doubt." CTV World Television, A Health News Production, USC Instructional Television Network, Los Angeles,1991.
2"CFS A Real Disease." Videotape produced by The CFS Foundation, Inc., 10 Wild Partridge Ct., Greensboro, NC 27455, (800)597-4CFS, 1992.