When It Comes to Your Health Care, You're Already the Expert
The author of The Health Care Consumer’s Manifesto offers advice on how to advocate for yourself as you would for your loved ones.
Apr 13, 2020Chronic Care Issues
Deborah D. Gordon has spent her career trying to level the playing field for healthcare consumers. She is co-founder of Umbra Health Advocacy, a marketplace for patient advocacy services, and co-director of the Alliance of Professional Health Advocates, the premiere membership organization for independent advocates. She is the author of "The Health Care Consumer's Manifesto: How to Get the Most for Your Money," based on consumer research she conducted as a senior fellow in the Harvard Kennedy School's Mossavar-Rahmani Center for Business and Government. Deb previously spent more than two decades in healthcare leadership roles, including chief marketing officer for a Massachusetts health plan and CEO of a health technology company. Deb is an Aspen Institute Health Innovators Fellow, an Eisenhower Fellow and a Boston Business Journal 40-under-40 honoree. Her contributions have appeared in JAMA Network Open, the Harvard Business Review blog, USA Today, RealClear Politics, The Hill and Managed Care Magazine. She earned a BA in bioethics from Brown University and an MBA with distinction from Harvard Business School.Full Bio
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A few years ago, Tessa, a mother of three school-aged kids, avoided getting a crown redone after a botched dental procedure. "It was an atrocious amount of money, and [I wasn't] willing to pay it," she said. But she had willingly spent just as much on a program with no proven scientific basis for her son's ADHD.
Tessa is not alone in deferring her own care even as she fiercely advocates for her son. When it comes to our children, partners, parents or close friends, a "mama bear" instinct often kicks in. Like warriors, many women tenaciously fight to get loved ones the health care they need.
Why, then, do we not advocate as fervently for ourselves?
In researching my book, The Health Care Consumer's Manifesto, I met countless women who did not advocate for themselves. Many were held back by the fear of being judged or labelled difficult, sometimes leading to dire consequences.
Some women I spoke with felt ill-equipped to challenge their physicians. Others, like Paulette, were simply taught never to question a doctor's judgement. As a result, she spent decades in chronic pain, unsuccessfully searching for the cause.
"Whatever [doctors] tell you is good, which is why I thought there had to be something wrong with me," Paulette said. She saw many physicians, none of whom she felt took her pain seriously. One said the chronic pain was her "cross to bear."
In her 60s, she finally received an uncommon diagnosis for a connective tissue disorder called Ehlers Danlos Syndrome. Her persistence ultimately paid off but it came at the cost of 40 painful years of frustration with her medical encounters.
Paulette's story is consistent with a 2018 review of two decades of research into gender bias towards patients with chronic pain. The review included studies showing women in pain were perceived as "hysterical," "emotional," and "fabricating the pain, as if it is all in her head." In several studies, health care professionals were not inclined to believe "medically unexplained" pain in women.
Evidence of systemic gender bias illustrates why it's so important for women to stand up for themselves. Urgent situations — when you are in pain and under duress — make self-advocacy especially challenging, but you may have more power than you realize. Using the following strategies can help you make sure your voice is heard.
Lead With Your Worries
In interviews with health care professionals, I learned that patients often wait until the end of a visit to raise their concerns or reveal relevant details. The average length of a primary care visit in the United States is approximately 20 minutes. That doesn't leave you much time; get right to the point. Begin the visit with a full description of your symptoms, and continue raising them and asking questions until you are satisfied that your health care provider is taking your concerns seriously.
The more information you give, the better able your doctor will be to help. Don't wait to be asked. Be assertive and make your voice heard.
Know When to Switch Health Care Providers
If you don't feel heard or respected when you go to your health care provider, try articulating how you feel. As awkward as that may be, Suzanne Koven, M.D., of Massachusetts General Hospital suggested it can help your provider give you better care. "I've had patients say to me, 'Look, this is really hard for me. What would really help me would be X,'" she said. "That's really helpful information to me."
If you've voiced your concerns and still don't feel heard, it may be time to switch health care providers. Choose a new one based in part on how you feel when you're communicating with them. You might be able to interview them, though not all clinicians will agree to that. If not, use an initial visit to gauge how comfortable you feel with them and keep looking if it doesn't feel right. Recognize your feelings as a valid selection criteria.
Pretend You're Advocating for Someone You Love
What would you do if you felt your mother or your best friend were getting the run-around in their health care encounters? Or if your child's doctor was not paying attention to their symptoms?
Chances are, you'd stomp up and down — metaphorically anyway — and insist that they get more attention. You might counsel a friend to speak up or get a second opinion. You might feel scared of the impact of a missed diagnosis, and angry if something bad happened because they didn't advocate for themselves.
When it comes to your own health concerns, you are the mom, the child, or the best friend to those people who care about you. Don't you owe it to them to follow your own advice?
Through this lens, self-advocacy isn't selfish or demanding; it's a caring act for those who love you. In fact, self-advocacy behaviors like assertiveness and educating yourself about your condition can lead to greater satisfaction with your health care experiences.
Navigating health care can be overwhelming; many of us feel helpless or embarrassed to ask questions or speak up if something doesn't feel right. It can be easier to assume the best and accept what you get.
But the cost of a missed diagnosis or incorrect treatment can be much worse than the risk of appearing pushy. No doctor or diagnostic system is perfect, and you alone hold valuable information about how you feel.
Err on the side of proactivity. You deserve the best care, delivered in a manner that works for you.