'I Am Not My Illness, It Is Only a Part of Me'

Tuesday, August 5, 2008

An occasional feature in which readers describe how they have adjusted to life with a chronic illness.

It began with a high fever and sore throat in the fall of 1996. I expected to feel better after a week, but the flulike symptoms, aching and malaise persisted. I was luckier than most: Within six months I had a diagnosis: chronic fatigue syndrome.

Determined to get well, I at first over-exercised, fell for fad cures and held out for complete recovery. I had to leave my job and fell into depression and negativity when each new prospect for improvement failed. After two years, my functioning level was still 50 to 75 percent of what it used to be.

One day I read Viktor Frankl's "Man's Search for Meaning." Frankl basically says, "The only thing you can really control in life is your attitude." I rethought my life through the lens of chronic illness. It could be called acceptance, but I regard it as more like a cease-fire between my mind and my body.

I still needed goals. My first step, lying on the couch every afternoon, was to improve my Spanish by watching telenovelas. I gave up trying to return to work as a social worker and found part-time clerical work at a local hospital. I could still help people and use my language skills, but I had much less responsibility and stress.

I try to concentrate on what I am able to do instead of what I have lost. I am not my illness, it is only a part of me.

-- By Susan Osborn of Fairfax, who gardens and volunteers with local environmental groups.

When I was first diagnosed as a diabetic, I remember being relieved that my illness was invisible. Walking around with a defunct pancreas seemed nowhere near as disabling as having a stump in place of a limb. While my diabetes educator gave me pep talks about learning to control my illness with regular blood checks, I was under the impression that life with an endocrine system out of whack would be no more debilitating than a bad hair day.

I wish it were so simple.

Yes, but for the nagging beep of the insulin pump under my bra strap, I do indeed look and function like a full-bodied, normal person.

But therein lies the problem. Take getting sick, for example. For most people, being sick is a dramatic affair. You've got your fever, your chills, your coughs and whatnot. For me, before I get any one of those things, up goes my glucose. High as the sky. Making me exhausted, nauseous and hungry, all at the same time. Once, it was an ear infection that set it off. Usually it is something so minor it is imperceptible. Always, I look as good or as bad when I'm sick as I do when I'm well. Which prompts a "You don't look sick to me" from my boss, when all I want to do is go home and sleep. How can I explain such things?

I suspect that the diabetics who remain undiagnosed are the ones who believe that they are not what a diabetic looks like. But a diabetic looks like anyone else, but for the annoying beep that sometimes sets us apart.

-- By Leda Gottlieb, a lawyer who lives and works in Arlington.

When they came to take me, I wondered how much of a person could be given away without being erased. Appendix. Uterus. This time, part of a breast, lymph nodes (those spacious bacterial flytraps). So far I've been cut, bled, scanned, tattooed, drawn on, injected with radioactive isotopes, anesthetized, X-rayed, medicated to numb pain. Radiation: After the machine stops its whirring sound, I swing my legs off the table and stand up. For a moment, the transition from being acted upon to acting on my own volition is dizzying. Afterward, I lay claim to my body. To my clothing. And to my life.

1955, Cold Spring Harbor Laboratory: Salvador Luria and Max Delbrueck (who would go on to become winners of the Nobel Prize for medicine in 1969) teach us how viruses bind to the surface of bacteria, insert their DNA into the bacterial cell, redirect it to replicate the virus. Multiplied, viruses escape the bacterium, lie dormant until coming into contact with another unsuspecting host. Why do I remember this now?

Though this infiltrating lobular carcinoma may one of these days do me in, I can only admire the incredible body we all possess, with its intricate, interdependent systems that most often stand by us.

If at times the onslaught from outside or from inside is too much for the whole system, if it cannot always respond in ways that would keep us here as long as we wish, so be it. But to be here at all, alive in this perishable and exquisite world is a gift beyond all others.

-- By Myra Sklarew of Bethesda, a professor emerita of literature at American University, who is working on a book on the neuroscience of memory and Holocaust testimony.

If you have a story about living with chronic illness that you would like to share, please send it tohealth@washpost.comand mark the subject line "Living With." No more than 250 words, please.