Advocacy When Sick, Part I: Loss of Control

This is the first in a multi-part series on how to be your own best advocate and friend in the event you find yourself in the unfortunate situation of facing a serious illness. Other Calling the Shot postings will deal with other issues, but the Advocacy When Sick series is specifically directed at those facing illness and the people who love them.

No matter what the illness or how severe it is, a major problem is the loss of control that a patient feels when diagnosed with an illness and/or going through treatments. This feeling of helplessness dominates a patient's mind and can cause the patient to feel his or her life is spiraling out of control.

And the problem is, that's exactly what's happening. The patient has been diagnosed with a condition that was never wanted and, in some cases, must have treatments on doctors' and nurses' timetables -- not the patients'.

And this is one of a patient's major frustration when dealing with medical personnel. 

While one cannot change one's medical circumstances and their timing, he or she can employ some coping mechanisms to help lighten the burden of feeling that life is spinning out of control. I want to share my own experience and then offer tips to help you feel that you at least have some control over your life.

When I was going through breast cancer treatments, one of my major psychological problems was coming to grips with the fact that I had to cancel business meetings and cancel parts of my life because a doctor and the chemo nurse were scheduling my life: They told me when and where I'd be getting the next round of treatment, when I'd see a doctor, if I'd see a doctor, and so on. I learned pretty quickly that saying "This date won't work for me; can we do the next day?" was futile. The nurse would say (nicely) "You will be here on this date." 

Said nicely or not, those words reminded me that my life was no longer my own, but it belonged to the doctors and nurses.

I'll give you a specific example from my treatment days: One day my radiology oncologist was on vacation (I knew in advance she would be), and I was grateful I wouldn't have to see her that particular day even though she was so sweet to me. After my radiation treatment, the nurse said, "The doctor will see you now" (It was another doctor). I stammered, "But my doctor is on vacation, and I don't want to see another doctor." Despite my complaints, the nurse ushered me into an examining room to wait to see the physician and said nicely, "The doctor will see you soon."

I started to sob. Like primal, baby sobbing. The nurse immediately held me in her arms, wiped away my tears and rocked me like the baby I was. I don't remember her name, but I wished I could've thanked her for giving me the compassion I needed, just at the moment when I felt I couldn't handle any more loss of control.

So whatever your situation, here are some tips to help make your loss of control seem more bearable and how you can feel that you've kept at least some of your control (this can also help loved ones of the afflicted family member):

• Tell doctors and nurses that you feel you no longer have control over your own life. I wish I had verbalized it; I could've avoided a few meltdowns.
• Tell medical personnel of your emotional state. I wish I had done this more often, for I would've felt less lonely.
• Each day write a list of what you do have control over.
• Realize that the truth is none of us has complete control over our lives.
• Realize that you are choosing or not choosing medical treatments.
• Remember that you are hiring or firing doctors and hospitals.
• If you need to, see a pastor, counselor, or whichever person who can best minister to your emotional needs.
• Ask for help from an organization that helps people with your condition. I went to Gilda's Club and used the services from the American Cancer Society's Reach to Recovery program.
• Journal about your feelings. Trust me, a journal will help you feel you have control over your situation because you can write whatever you want in it and not be judged. My journal became my friend.
• Become involved in hobbies that encourage self-expression, such as painting, photography, making collages about your feelings, music, writing, etc. or just get involved in any hobby that you already have or would like to have and can do. You do not have to be Michelangelo or Bach. The point is to keep busy and be distracted from your personal pain.

These tips can somewhat alleviate your feelings that life is spiraling out of control. And any peace of mind, especially when faced with illness, is worth fighting for.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.