Lessons Learned From Crohn’s Disease

When I look back over five decades of life, I discover that my greatest treasure trove of learning comes from the experience of having Crohn’s disease. An old adage often voiced states, “What doesn’t kill you makes you stronger.”  I believe this; and also that it makes you wiser.

The first lesson I learned from Crohns was how to deal with pain. This lesson had to bang me on the head for many years before I ‘got it’.  In accepting pain as a given in my life, I was able to lessen its importance, and thus reduce its impact.

Coping with the disease brought me a new depth of feeling. When my husband pushed me down the hospital corridor in a wheelchair because I was too weak to walk, we passed a diabetic woman who had no legs. I was attached to so many machines, tubes and drains that movement was out of the question, yet, in the next room the nurses unhooked machines from a patient who couldn’t be saved. Crohns put me in the hospital, where I learned compassion and gratitude.

I was 29 when I was diagnosed, and ran my life like a balance sheet for giving and receiving. It was okay to invest more than I received, but I must never run a deficit. My lengthy illness made caring for my family or myself impossible at times. It forced me to become a ‘taker’ on a large scale. This caused me considerable stress until I understood that in accepting someone else’s gift I gave them back a gift. I provided the opportunity for them to be generous, kind, reach beyond their own problems and feel good. I learned that instead of saying, “you didn’t have to” or “It wasn’t necessary” that I could ennoble their gift. That I could wrap my appreciation up in the bow of sincere words like, “The energy you saved me by bringing dinner allowed me to play with my children for an hour. Thank you.”

I learned early that if I couldn’t walk in someone’s moccasins I could at least try them on. I gained a new respect for all hospital employees. In the long waits for test, I learned patience. In coping with the mistakes of doctors and nurses I learned tolerance. And I came to see that I didn’t improve a situation by being negative, complaining or whining. Crohn’s forced me to grow up.

I witnessed the true meaning of keeping a marriage vow, as my husband followed me into hell. Though he often teased my mother with, “if I knew she was in this bad of shape I’d have bought a warranty,” my husband suffered terribly, as men do, who feel helpless. Yet, he stayed through sickness as well as health.

Crohns also introduced me to a few new philosophies and strengthened some beliefs I already held. I received the proverbial second chance at life and learned each moment is precious – not to be sullied or wasted.  I learned that out of every difficult situation comes good and that we recognize the good at some point during or following our travail. Just as the difficulty spreads wide to encompass many people, so does the good – often it is great good with immeasurable results. The changes in our life molded our children into strong, independent, adults.

I learned that “man really is an island”. Granted I could reach across the water that surrounded me to ask for help and often even hold the hand extended, but in the end, when it came to life and death decisions, I made them alone. I said, “Yes I’ll have the surgery” or “No I won’t allow you to give me that treatment”.  Only one hand can throw the dice of life and death.

Experiencing Crohn’s disease taught me a great deal about the disease and coping with illness of any kind. It motivated me to interview many people living with invisible diseases, and to write a book about the commonalities of their experiences.* These people handed me many practical tools for living ‘well’ with chronic disease.

I proved to myself over years of hospitalization and experimenting with wellness that humans are potentially self-healing by design. So it is up to me to create the balance of mind, body, spirit that allows me to heal. With these beliefs as an intellectual springboard, I created the lifestyle that best allows me to honor them. We built our home by the river. I do the work I love. I actively seek the solitude and quiet that I know will keep me in balance.

Crohn’s disease appeared like a terrorist, inducing fear. In fighting the fear with love, I grew and flourished – body, mind and spirit. I broke free of its cruel death grip with a will to survive that amazes me to this day. Occasionally, my illness attacks again and I struggle to defeat it. But I do so now with deliberation rather than rage; because I am certain this fierce combatant still has more to teach me.

*The book, Chronic Challenge, will be published by chapters in this blog later this year.