Let in only those who can help you move past the fear of a terminal illness
By Patti Carmalt-Vener 01/24/2013
Two months ago, I found out that I have a very serious illness. It’s probably terminal and, if incurable, no one knows whether my life expectancy is 5 months or 15 years. I have to have more tests and see how I respond to certain treatments to sort all that out.
I am 41, have a sister, an elderly mother, two girlfriends and a fairly new boyfriend. I haven’t told them about my life-threatening situation and am not sure I will. Much as I’d like their support, I’ve always been very private as well as very independent, and this news is especially hard to talk about.
I’m seeing a counselor and since my diagnosis have been going to a weekly support group. So far, my psychotherapy contacts are the only ones who know my medical situation. Therapy has been a tremendous support in helping me deal with my multitude of feelings.
I’m doing pretty well except when I have to go see one of the many doctors or spend the day getting more tests. I get overwhelmed, scared and anxious. I’m receiving good medical attention, but I haven’t been careful about keeping medical records and feel incompetent in answering all the doctors’ questions and questionnaires. I get nervous and shut down when talking to doctors and nurses and feel pushed aside, which is a concern. I want to be involved in the decision-making after a full diagnosis has been reached.
I’m so very sorry you have to go through all this and am happy and relieved you’re receiving good medical and psychological care. When engulfed in stress and fear, I understand how it could be difficult to structure your medical history. When you’re calm and feeling your best, write out a full medical history and key information, including current and past medical problems and symptoms, a list of medications, past surgeries, health insurance information and other needed facts such as addresses and phone numbers of other doctors as well as next of kin. In addition, include alternative medicine and treatments such as vitamin supplements and acupuncturists.
Keep a list of your questions and a notebook to write down important information. Before each doctor’s visit, all you’ll have to do is update these entries, such as adding new symptoms or responses to tests. This could be an objective measure like daily blood pressure results or something more subjective such as intensity of pain. These notes will assist the medical professionals in determining a diagnosis and treatment plan as soon as possible.
Another possibility is to bring someone close to you for emotional support, to aid in remembering what was said and `to ensure the doctors answer your questions when you feel numb, helpless or out of control. It’s OK to clearly express that you want to be involved in the decision-making process. Understand what each test is for and get educated about the risks and benefits of any tests or treatments you agree to. This is your new job — to help the medical professionals in their objective to find the best treatments available.
Your preference to keep your medical diagnoses private may stem from several reasons, such as a fear of stigma, pity and burdening others. While you shouldn’t feel required to divulge your condition to family and close friends, there can sometimes be serious ramifications of not sharing what’s going on. Keeping this crucial information from your loved ones may deprive them from sharing your experience, having an intimate relationship with you and inadvertently depriving you of essential support. Make sure any concern you have about stigma isn’t really about feeling ashamed; you have nothing to be ashamed of! Think about each person who is close to you individually. Maybe there are some you can tell and others you can’t. Maybe it would be too difficult for your elderly mother or new boyfriend to handle, but your sister or best friend may know exactly how to be supportive and keep your secret. Conversely, maybe it’s your mother and boyfriend who are the most trustworthy. Let in those who can help you move past the fear. Keep your dignity, independence and privacy as best you can but please don’t go through this unbelievably difficult experience all alone.
Patti Carmalt-Vener, a faculty member with the Southern California Society for Intensive Short Term Psychotherapy, has been a psychotherapist in private practice for 23 years and has offices in Pasadena, Santa Monica and Canoga Park. Contact her at (626) 584-8582 or email firstname.lastname@example.org. Visit her Web site, patticarmalt-vener.com.