Chronic Disease: From Coping With Personal Pain to Helping Others

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by Clorinda Walley, executive director, Good Days from CDF

My family is the highlight of my life, the joy in my every day and my motivation for moving forward at times when I don't think I can keep going. I remember lying in the hospital at the onset of my ulcerative colitis thinking about how I had to keep fighting for them. I had to be strong for them and show them what it means to overcome adversity and persevere.

I have always been a strong woman. As one of 12 children, I was taught from an early age to be self-reliant and make do without leaning on others. Asking for help was not something I did often.

Fast forward to the beginning of my grueling diagnosis process, which started while I was pregnant with my third son. I was driving to work one day and suddenly my fingers and toes began curling under. I had to turn the steering wheel with my wrists just to make it to the doctor's office because I had no control over my own hands!

My mind began racing. How was I going to cope with this disease? What else would begin happening to my body? How far would it progress? Could I live through this pain?

Slowly I moved forward. My husband and I welcomed our third baby, and my family began to adjust to my new norm. Learning to live with this unpredictable disease placed a tremendous amount of stress not just on me, but also my marriage. Add to the mix three little boys—a newborn, a toddler and a 6-year-old—and to say times were trying would be a gross understatement.

Having a family and living with ulcerative colitis was something I never could have prepared for in my wildest dreams. Many days, I was exhausted before I even got out of bed in the morning. The "strong one" was now in uncharted territory. I began to understand that I might have to ask for help.

And that is what I did. And it is how I learned to cope. These days, I no longer refuse help (though it's still hard for me to ask for it), and I have learned to accept my family as a support system. I have learned to take each day as it comes, being as organized as possible and as prepared as I can be.

Through it all, I accept my disease as a daily reminder of just how fragile life can be. And I am grateful that through the help of breakthrough medications, not only can my disease be managed, but I can go on living my life with my beautiful family.

My three boys are growing into strong men, and they will be compassionate and kind-hearted for having experienced this condition alongside me. We are a family, and we are in this together. At the end of the day, that's all that really matters.

To all wives and mothers with chronic conditions out there, know I'm here for you. I understand your fears and share your exhaustion from the heavy load you carry.

We understand more than you know.

Clorinda Walley is executive director of Good Days from CDF, a copay assistance philanthropy that covers insurance copays to help people with chronic diseases who cannot afford their medications. It is an independent 501(c)(3) nonprofit organization.