“If a patient has a serious illness, they enter a whole new world. This includes language, terminology, and shocking material to absorb.”— David A. Rapkin, PhD, Clinical and Health Psychologist, Mind-Body Medicine Group, Division of Head and Neck Surgery, UCLA David Geffen School of Medicine, Los Angeles, CA
I was hesitant to write a chapter on serious illnesses or chronic medical conditions as there is so much information you need to know. There are entire books written on these subjects and I encourage you to seek them out.
If you have a serious illness or chronic medical condition, it can take a toll on your emotional health as well as your physical health. It can be a challenging time and it may be difficult for you to ask for help. If you haven’t asked for help already, know that your loved ones want to assist you. Think about it: If your spouse, loved one or close friend had a serious illness or medical condition, would you not want to help her? Try to allow others to assist and care for you.
Get an Advocate
If you have a serious medical illness or medical condition, you must enlist the help of a family member, good friend or profes-sional patient advocate. You may not think that you will need someone like this, but most patients do. Even patients without serious illnesses need advocates. Not because you’re inept or cannot do the job yourself, but because the emotional and physical stress that accompany a medical condition affect how you will manage your treatments, side effects, conversations with doctors, medications, health insurance and much more. Dealing with a serious medical illness causes stress. Stress inter-feres with cognitive function. You can ask a loved one to act as your advocate or enlist the help from several loved ones to act as a team of advocates for you. You can also hire a professional patient advocate to help you navigate the medical system.
Qualities of a Good Advocate
A good advocate should be:
- a good communicator
- well organized
- attentive to details
- willing to do research
- appreciative but assertive with medical professionals
I’ve been an advocate for loved ones, and believe me, there are many gifts in giving. Even though it was not easy being an advocate for my mother and godmother, who were seriously ill and in hospitals for extended stays and died in those hospitals, I would not have traded what I did for anything. It gave me a chance to give back for all they had given me. Being involved in their care also gave me a sense of control. Standing by when a loved one has a serious illness or medical condition isn’t easy, but most people want to help in some way. Try to remember that if accepting help is difficult for you.
I have also been in a position when my pain was at its peak and I had seen too many doctors who could not find an accurate diagnosis and treatment plan. It was at a time of complete desperation and I could no longer handle everything myself when I asked a good friend who is medically savvy to be my advocate. In addition to my husband and a couple of close friends who were very supportive of me, I chose F. because she was very smart, understood medical language, had experience managing medical practices and was very caring and supportive. It was not easy for me to ask her. I have always considered myself to be strong, both physically and emotionally (not to mention controlling), so asking someone to help me was out of character. F. agreed. I offered to pay her. She refused. She said her payment was to see me get well and become pain free. She wanted to see me get my life back. I am very grateful to her to this day and would return the favor and act as her advocate in a heartbeat.
Not everyone has one person they feel comfortable asking to be their advocate. You can create an “advocate team”—two or more loved ones who pitch in as your support team throughout your illness or medical condition. I didn’t just have F. My husband and a few close friends were also a part of my support system. I am grateful to each one of them for being there for me while I was sick.
Give yourself permission to ask for help. You’ll be glad you did. You can ask your advocate to:
- take you to appointments with your doctors
- take you to treatments, surgeries or procedures
- sit with you while you meet with medical professionals and act as a second set of eyes and ears. You might not remember everything your doctor tells you if you are not feeling well.
- take notes on conversations with your doctors
- go through your health file, health summaries, lists of medications, medical records and more, to make sure you have the essential information to take with you to your appointments with doctors and other medical profession-als
- help you research your diagnosis, doctors, treatment plans, medical facilities, medications and more
- talk with you about your illness or medical condition to help you distill information you have heard
- sort through your medications to make sure each one is what you are supposed to be taking
- and much more.