I am Patricia Draper. I am 65 years old and have been a chronic pain patient for 27 years. I have documented my experiences to try to help others. This paper was presented to medical professionals and to chronic pain patients recently. I am a member of the American Pain Foundation and a member of the Southwest Virginia Pain Initiative. I am not a medical professional.
2008 DESIGNATED AS THE YEAR OF WOMENT IN PAIN
Pain not only dramatically changes the life of the woman but, just as important, uproots and radically changes the life of the loved ones around her. Women in pain fulfill certain roles, even if they are in pain. Wife, mother, and grandmother are just a few of those roles: these you cannot abdicate from like a job.
MY ROLE AS A WIFE:
Before the pain my husband and I used to love rigorous and adventurous outdoor activities. All of that ended with the onset of chronic pain.
Before the pain our house was the gathering place for all Holidays. I prepared large holiday meals for the immediate and extended family. After the pain began we go out to eat or bring carry-out to the house. My kids still talk about those days, their favorite dishes, and ask for the recipes.
Before the pain my husband and I would crowd our calendars with long and short trips, hobby activities and vacations. Now, no matter how much we want to attend an event or go on a trip, we must now consider my ability to withstand the stress and be satisfied that the available accommodations will not create a situation for increased pain. We must also space our activities so that I have plenty of time to recover between trips.
As a result, our roles have changed from full, active partners to a chronic pain patient and a caregiver. I have participated in many support groups and I have seen many marriages that cannot withstand this tremendous role shift. The marriage often ends in divorce because the husband cannot understand that chronic pain is a real illness and a lifetime illness.
MY ROLE AS A MOTHER:
Before the pain, I did many activities with my children--camping, biking, swimming and boating, etc. After the pain, I became a spectator and our togetherness faded.
My pain began at the worst possible time in my children's lives--their teen years. I was in crisis with horrible pain that could not be diagnosed at that time and therefore I was not given adequate pain medication. I was not myself during that time, but I believe my children understand now and have forgiven me for not being there for them. They have become very loving and considerate adults.
My name is Lynda. I live in Richmond, VA., am 58 years old, and since 1997 have lived with constant chronic pain. When I read your story initially, I wept; then later the same day, I reread your story to my husband as personal validation that someone else shares struggles with pain which are so identical in many ways to my own.
I would like to personally communicate with you in an effort to improve communication between my physicians and myself. Often, I feel that my words fall upon their death ear, and there must be a better way for me to express my pain and all the accompanying symptoms.
Please click on my name to send me a personal message; and know that I genuinely look forward to learning from you.
Lynda,
I am so very happy you could identify with my problems. As usual, most people, including doctors, seem to think that chronic pain patients are just about pills and medicines. (That is if they believe chronic pain is real.)
As the years pass, you began to realize that doctors, family and friends don't understand emotional devastation that occurs with our illness. They don't realize how much I had to give up just to stay moderately functional. I lost my job, had to give up my favorite hobbies of needlepoint and gardening. My mother had a heart condition, but she never had to give up her needlework and gardening. People just don't understand that only so little time each day that I can function. I prioritize my personal hygiene, then food purchasing and preparation for me and my husband--my arms will only function at counter level for about 15-20 minutes before they start to hurt. Thus, my husband eats a lot of TV dinners. Housework, washing, and other essentials are done by my husband or a cleaning company, while I sit there looking like the healthiest person in town
I have cried several times in my doctor's office, not from pain, but from emotional issues. He is a wonderfully sympathic doctor who listens indefinity while I talk. He gives me very good advice, adjusts my medications for the situation, and has offered to refer me to counceling whenever I feel the need. I hope you have or will have a doctor similiar to mine.
I can only hold my arms up to the keyboard for a short time, so I will close for now.
The weakness and pain keep me from being very active on the computer--another problem that no one associates with my chronic pain.
Looking forward to hearing from you,
Pat