Blindfolded on a Roller Coaster

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I became ill with CFS just after graduating from college. I had just started a new job as an alcohol and drug counselor and had plans to go on to get my master's degree. After only a few weeks on the job, I became very ill. Instead of getting better, I only kept deteriorating. I began missing more and more work due to the illness and was asked to resign.

After resigning, my parents began supporting me. I was able to keep my health insurance for a limited time under COBRA, but it was quite costly. Had my parents not been able to pay for it each month, I would have had no health insurance coverage. It has been a financial struggle for my parents to support me, but we've somehow managed.

Through a friend, I learned about social security disability. I applied, but was denied because I hadn't worked long enough. I worked my way through college, but I learned those jobs didn't count because the money wasn't taken out for social security since I was a student.I then applied for SSI. It took over a year and a half of fighting to obtain. Even receiving SSI, I still live way below the poverty level. I'm trying to stay off of welfare, but someday I may have no choice but to apply for it. I know my parents won't live forever and I don't know when or if I will ever be well enough to work and support myself again.

Living with CFS is like being blindfolded on a roller coaster. You never know where you stand from one minute to the next. The symptoms come and go often with little warning. I have brief moments when I think I'm finally getting better only to be thrown another curve. I never know which symptoms are going to flare and/or worsen. And being sensitive to so many foods, chemicals, and medicines makes life even more complicated. It's very difficult to find natural/organic products. When I do find them, the prices are generally so outrageous that I can't afford them.

The uncertain course of CFS leaves me extremely frustrated. I want desperately to get on with my life, but the CFS seems to be holding me prisoner and refuses to let go. Dealing with doctors has only compounded my problems and added to my frustration. I have learned that with most doctors, if they can't see it or have some diagnostic marker, then the patients symptoms are automatically blamed on psychological problerms. Or, they tell the patients, "it's all in your head." I have been tossed like a Ping-Pong ball between doctor's and therapist's. The therapist's
tell me I'm physically ill and the doctor's tell me it's all psychological. I've had batteries of psychological tests which have shown that psychologically I'm fine, but physically I'm ill. It's a no win situation and the stress of trying to cope with it all only makes me more ill.

I do struggle with anxiety and depression, but it's the result of being ill and the constant frustration of dealing with doctors and closed-minded people. Many of my friends and relatives don't understand I am ill. They look at me and tell me I look fine, therefore, I must be fine. If it only were that simple. People can be very ill without showing many, if any, external signs.

In addition, I struggle with the worries of not knowing when or if I will get better, the possibility of losing the SSI, and the uncertain course of CFS itself. I watch as my friends go on with their lives and careers and wonder, "will that ever be me?" I don't ponder it long, though, because self-pity only makes living with CFS that much darker.

Having CFS is a challenge. What used to be simple tasks of daily living have become like mountains to climb. They leave me absolutely wiped out and ill. My mind doesn't work like it used to anymore either. Which adds another dimension to deal with. It's as if my brain short circuits and everything scrambles. It's all I can do to get through what I have to each day and I often need assistance from others. For me, it's very difficult to ask for help, because I try so hard to maintain some degree of independence.

Living with CFS is no picnic. It's not something I would choose if I had the choice. CFS is like any other health problem. It's a physical problem with far reaching consequences touching every aspect of a person's life. I keep hoping that the research currently being conducted will yield some answers. Perhaps a cause and an effective treatment/cure will be found soon. Until that time, I can only be patient and keep taking things one day at a time.

The author is a alcohol and drug counselor