A 5-Step Plan to Effective Health Care Self-Advocacy

Posted on June 28, 2022

Curious about the #1-character trait of a person who is extremely effective in the management of his/her healthcare? It all comes down to self-reliance – the ability to trust and rely on one’s own instinct and resources rather than depend on those of others. To be self-reliant, you need to know and acknowledge your strengths and weaknesses. Through observation, inquiry and information, you become empowered.

Curious about the #1-character trait of a person who is extremely effective in the management of his/her healthcare?

It all comes down to self-reliance – the ability to trust and rely on one’s own instinct and resources rather than depend on those of others. To be self-reliant, you need to know and acknowledge your strengths and weaknesses. Through observation, inquiry and information, you become empowered.

Many years before becoming a professional patient advocate, I discovered self-reliance through self-advocacy is developed by being actively involved in one's health care. One experience in particular confirmed my instincts to be correct.

While driving home from evening office hours at a rural health center, I was rear-ended while traveling down a steep hill in a snow storm. The pain on the right side of my neck was immediate.

After digging the car out of the snow bank that I had been pushed up and into by the driver behind me, then with the blessing of the investigating officer who declared my car as being safe to drive and continuing to experience a good deal of pain, I stopped by the ER on my way home. Following an x-ray, I was diagnosed with a whiplash injury, sent home with care instructions, medication and advised to see my physician as needed.

I eventually considered myself healed as over the course of the following months, discomfort consisted of an on-and-off again stiff neck on that right side. A year or two later I developed debilitating migraines, eventually ceasing following several years office visits and trials of a variety of medications for the symptoms. It never occurred to me to insist on exploring the root cause of the pain and discomfort.

Ten years ago, about 20 years following the accident, I started noticing tingling in the fingertips of both hands. I was also chocking. One day, while at work, I choked on a turkey sandwich, severe enough to require the Heimlich maneuver to open my airway. Something was not right.

As it turns out, I was most fortunate that my regular physician was out on an extended leave. Not wanting to wait, I scheduled with another physician in the practice. This woman listened to my concerns and took notice of the limited range of motion in my neck. After peppering me with health history questions, a CT scan followed by an MRI was scheduled.

I was notified of the results a few days later and was stunned by her immediate comment, “Whatever you do, don’t fall.” Turns out I had severe compression of my 3rd and 5th cervical discs. Her response to my inquiry concerning next steps – a physical therapy assessment, most likely followed by cervical fusion.

In a matter of seconds life, the way I knew it, had changed. In that instant, I began to advocate my way to becoming self-reliant. I asked questions, she responded, finally advising, should I opt out of surgery; my quality of life would be lessened. . . at least I would be alive.

I searched to discover what, if any other options existed, eventually settling on the surgical replacement of my damaged discs with titanium discs. Following surgery, I returned to my hotel room, met with the surgeon the following day, was cleared to fly home. A few months later, I went zip-lining with friends. Today, I am in the best health of my life. Thankful for self-reliance and extensive knowledge of the healthcare system.

Based on this experience and other situations I’ve since advocated for - on behalf of family, and now (patient) clients and their families, I always rely on these 5 basic health care advocacy steps:

1. Find a good doctor. A primary doctor you feel comfortable with (patience is required and it may take more than 1 attempt/visit to determine a good fit.) Begin by making a list of the qualities that matter to you - he or she. . . evening office hours . . . speaks your language . . . individual or group practice . . . associated with a specific hospital or medical center and anything else, that is important - to you.

Someone who:

· makes it a point of getting to know you

· knows what normally health looks like for you

· will help you make medical decisions based on your values and habits

· recommend other medical specialists and providers.

2. Know your family medical history including parents, siblings, and grandparents. Most people have at least one chronic disease. You and your family share genes. Knowledge of family diseases and health conditions, even behaviors you may have in common.

Take advantage of family gatherings to talk about health history. Take a look at death certificates or health and medical history’ that may be in the hands of the family historian. Grandparents, who are able to remember past family members are a great source. They will appreciate your interest. You may be surprised what you learn.

3. Share your medical history, current symptoms, current medication, lifestyle including your self-care habits with your physician. Remember healthcare providers don’t have a lot of time, so be brief. Better yet, provide him or her with a prepared summary.

4. Prepare questions concerning your medical condition(s), particularly if there may be concern about impairment or disability. Resist the temptation to “not go there.” It is important to know, particularly if your diagnosis(es) may affect your work, family life, independence, life-style, recreation and social life.

5. Go with the flow. Let go of perfection and the pressure of getting it right.

Stay true to yourself. Take the time to prepare for office visits and those important conversations, next steps, professional recommendations, expected outcomes. If during the course of any health care conversation, with your primary provider, specialist, surgeon, and others use to giving the orders, you have concerns, questions, or need clarification. Make sure to ask. It’s your health and care.

If you become overwhelmed, stop the conversation. Explain your hesitancy, ask questions or if you need time to think about what you are being told, or the physician seems distracted for any reason, request a follow-up appointment to continue the conversation at another time.

Carol L Mark author of Solo and Smart: The Roadmap for a Supportive and Secure Future commenting on self-reliance notes “. . . when strong, it gives courage and backbone to stand up and look out for ourselves.”

You’ve got this.