Five things I have Learned From Being a Health Advocate

1. Everyone needs a support system. If you have young children, make sure that you have one family member at least, a sibling, parent, parent in-law who you trust, who knows your wishes (and where all your important papers are). If you have adult children, choose one of them to be in charge if there were a sudden severe health problem.

If you don’t have children, make sure a good friend, or cousin whom you love, is kept abreast of your situation. I have learned that health problems often creep up slowly, but then overnight seem to bloom into crisis and no one makes good decisions during a crisis.

2. You do not create the situation by planning for it. I know that many would think this is the American culture side of me talking, and perhaps that’s accurate. Be that as it may, crises are much better dealt with when you have the information you need, the health provider you’ve already created a relationship with, and an understanding of the system.

Case in point. I have a client whose mother was diagnosed last year with Alzheimer’s. She’s doing great, some memory issues but is still functioning well. However, last week my client took a day and went around the city where she lives looking at several day programs for people with Alzheimer’s. Her mother doesn’t need those services, now, but pretending that the situation will not get worse is not helping anybody. Now my client knows which programs will work for her mother and which will not; she has met with the directors and understood the application criteria so when it comes time for a change, she has the information on hand and can make an informed decision.

3. Organizing your papers is crucial. I cannot emphasize this enough. The first time I meet with someone, I always ask them to bring me their medical papers surrounding the particular issue they want to discuss. They do bring a file, usually, often with unopened letters from the insurance company, and a wide array of papers, many often not connected with the medical issue at all. We end spending part of the time just sorting through reams of papers.

Trust me. I know that not all of us are gifted with the organizational gene. You can just ask my husband, who must lament at my messiness. That is why years ago I forced myself to buy a binder (one that I liked), some clear nylon dividers, and take it with me every time I go to the doctor for either myself or one of my children. That way all relevant papers are stashed just where they need to be and I don’t have to worry about finding the relevant referral when that appointment I’ve been waiting for 8 months, is tomorrow. It doesn’t have to be fancy, it just has to be. Click here to download clear instructions about how to organize your medical binder.

4. Everyone makes decisions differently. Years ago, I coordinated a study for nurse who was looking at what influenced women to have (or not have) routine mammography screening. She based her research on that of Dr. Penny Pierce, who had then identified four types of decision makers: Deferrers, Delaying, Avoidance and Information Seeking.

Some of us will always want someone else to make the decision for us. We don’t want the responsibility. Others put off the decision as long as possible. Still others do everything NOT to make a decision, and others need seek out information from various sources before choosing something. There is no right way, but you do need to know what your natural tendency is so at the end of the day, somehow, an actual decision is reached.

5. Everyone needs someone when they go into a medical situation. I had a conversation once with a potential client who had just made Aliyah. I was explaining to her that she needed to take a friend with her upcoming routine appointment with the specialist, so she would have someone else there. “I don’t need a babysitter,” she said. “I should be able to do this by myself! Making Aliyah is so frustrating,” she continued, with tears in her eyes.

Yes, making Aliyah, and staying with your Aliyah can be enormously frustrating. But that issue was not connected to taking another person with her to the appointment. I’m a health advocate; I’ve spent the last twenty odd years of my life dedicated to the field of health research, promotion, navigation and advocacy. It’s my living, and yet, when I had a problem in my pregnancy, of course I took my husband! Not because he was the father of the baby but because when you are the subject of the doctor’s scrutiny, you can’t think like an advocate. You don’t hear the same things. Another person in the room is crucial, for support, for a different perspective, for representing your interests.

Click here to download your list of essential items to take with you to every doctor’s appointment.

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