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|Newsletters: How I Learned to Cope|
How I Learned to Cope
Cheryl Cheney Fox
I have an intestinal disease that was diagnosed when I was a child. I won’t bore you with all that I have gone through, but I am on home parenteral nutrition (HPN), like maybe you are.
While we may not have the same disease, I doubt the differences between our illnesses matter relative to coping. I think coping is necessary for all who suffer life-changing illnesses. I will try to share with you how I learned to cope with being sick for most of my life.
Desperate in Dallas
In the mid-1990s my intestines were inflamed with Crohn’s—yet again. The flare was so bad, my intestines were almost completely blocked. At the time the doctors were telling me if I had another resection of my intestines, “my life span would be greatly reduced.” I had a small child, I was a single parent (by choice), and I was so ill I was unable to eat even small meals. As my daughter Hayley lay next to me asleep at night, I would cry and think, what I have done to this poor child? I begged God to let me live long enough to see her grow up.
I had friends who took it upon themselves to find something that might “cure” me or make me significantly better. They found a doctor in Oklahoma City (I lived in Dallas) who was considered the best Crohn’s doctor in the United States. He was doing research and needed patients. Of course I spent my last dime—and I only had a few—and made the trip to Oklahoma City to see the doctor.
Real or Placebo?
The doctor enrolled me in a double-blind study. For the next two months, I dutifully awoke early in the morning, gave myself an injection, and went about my day. I carefully maintained a journal of how I felt, how much I went (my output), pain, food intake, etc. I had noticed previous to the study that there were days when I felt great, though my Crohn’s was still bad. I had every other symptom—profuse diarrhea, pain, and so on—and I never understood why I would feel so well some days.
Anyway, during the study I was convinced I was getting better. I mean, I felt great, though my other symptoms had not diminished at all. At the end of the study I made the three-and-a-half–hour trip to Oklahoma City to complete my participation in the study and to find out whether I had been taking the placebo or the study medication.
When I got there I was convinced I was giving myself the actual medication. I was quite surprised when the doctor told me I was on a placebo. Initially I was upset because I wanted “the drug,” you know? Never mind feeling like I had been duped and being just a tad embarrassed at realizing how I felt must have been all in my head! Do you know what I mean?
Then it HIT ME. To some degree, how I feel or how I am doing at any given time has to do with my perception. In other words, half my battle with my illness is in my head. What a GREAT revelation! I can control how well I feel physically though I cannot stop the disease. Does this mean I don’t have bad days? Of course not! I allow myself to be angry, lick my wounds, cry or whatever, on occasion. I have to because I am human.
My daughter is grown now and she recently had my first grandchild. I never thought I would get to see her grow up, much less see her get married and have a baby. But, and by the grace of God, I did, and I am convinced it’s because of my attitude. What a glorious ending to what was such a difficult and heart-wrenching few years.
I hope this helps you cope, even a little. Always remember, you aren’t alone, no matter how it may seem.
Editor’s note: Cheryl was invited to write this up for the Oley newsletter after we saw a post she had shared on the Oley-Inspire forum. When you are feeling alone, the forum can be a good place to go for support and friendship. Visit www.oley.org, and choose “Oley-Inspire Forum” under the “Meet Consumers/Patients” menu.
LifelineLetter, November/December 2013
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