YOU CAN’T ALWAYS GET WHAT YOU WANT

By agebuzz Contributing Editor Julie Buyon

But if you try sometimes, you might find, you get what you need. (**Wisdom courtesy of The Rolling Stones)

Sometimes there’s a disconnect between what we want and what we need.  What makes us better and what makes us feel better. In earlier posts, I have written about taking stock of what is most important to you  (identifying your values, personal goals, and how you want to live) and understanding how you personally process information about your health. 

This kind of self-knowledge is so useful in health care decision-making. It’s a big part of the information you bring to the patient-doctor partnership; you, the expert on YOU and your body, plus the doctor, the medical expert. These two experts, working in partnership, can provide the best care.  But even in great and longstanding partnerships, there can be communication issues.

An example: Ann was upset by a recent medical encounter. Her annual mammogram revealed a small area of concern, which the radiologist recommended be monitored with another mammogram in six months. Ann’s gynecologist agreed that was a sound way of proceeding. But Ann was distressed. She worried the “small area of concern” might be a cancer that was growing. She worried that another mammogram would be an unnecessary additional radiation exposure. She felt that her health care team wasn’t taking this seriously enough and that she would have to be a fierce advocate for herself to get the care she needed. She decided she was going to demand that a biopsy be done.

Now, I am all for being a fierce and fearless advocate for oneself, but in this situation, Ann was trying to be the “medical expert” rather than the “Ann” expert.

It seemed that this encounter created anxiety for Ann. I suggested that she share with her health care team that it was making her anxious, including her concerns about a possible cancer being left to grow and overexposure to radiation. I encouraged Ann to share her “Ann expertise” and explicitly say “I find this scary and distressing.  It feels like I will carry a huge weight of worry on my back if I wait 6 months for another mammogram, but I am also concerned that the radiation from another mammogram could harm me. Can you please help me with these worries?” 

By sharing her “Ann expertise”, Ann can tell her doctors what she needs to know and feel in order to be OK with the recommended next steps.

I am so grateful to Ann, as I was thinking about her a few days later when I had a scare of my own. I suddenly started seeing a lot of floaters in my eye and some other issues that, with some brief medical research, were potential causes of real concern. After a thorough exam, the ophthalmologist explained that what I was experiencing was a very common problem for aging eyes, that there was no serious damage, but told me to call immediately if it happened again and to schedule a follow-up visit in a month’s time. Even with an explanatory pamphlet in hand, I was still worried and anxious.  I did not want to leave his office feeling that way, so I said, “I need you to tell me that I am not in danger of losing my sight.” Thankfully, he did just that.

I didn’t quite get what I wanted, which was to hear that absolutely nothing was wrong, but I got what I needed, which was the reassurance that my sight was not in jeopardy. And that was enough to make me feel better.

It’s not always possible to know what you need to hear before seeing the doctor, but if, at the end of the appointment, you remain uneasy, confused, or unhappy, share those feelings with your doctor. Together, you just might figure out what you need.

Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].