Tuesday, March 13, 2012

Good Medicine: Advocating For Ourselves

I read an article in the New York Times about lessons learned from pediatric medicine and how they could be transferred to adult medicine. The article points out that everyone expects children to be afraid and need the comforting presence of a parent. Maybe adults need TLC, too. I’ve been a professional medical patient since 1997. At first I didn’t know how to advocate for myself. Hospitals and clinics are intimidating places. There is an air of authority that makes me feel afraid to ask for what I need. It still isn't easy, but I'm learning how to advocate for myself.

The article talked about blood tests and how they use smaller butterfly needles for children. I’ve always hated getting blood tests. It wasn’t the initial poke that bothered me. It was switching from one vial to the next. The click of the next vial always shoved the needle deeper into my vein. I hated it, but I didn’t know there was an alternative. When I was having pre-surgical testing done before my cancer surgery, the phlebotomist used a butterfly needle instead of the standard set-up. Instead of the pressure with each vial change, I didn’t feel anything. It was a minor change that taught me something valuable.

The next time I had a blood test, I asked for a butterfly needle. It was the first time I advocated for myself. Later on when I had chemotherapy, I got a port-a-cath implanted under my skin. The idea of having a needle inserted in my chest scared the hell out of me. I sat in a chair in my oncologist’s office and I wanted to tell the nurse how I felt, but I was afraid to speak. I was afraid she would laugh. I was afraid she would tell me there was nothing to be afraid of. But as I saw that hook shaped needle coming closer to my chest, I was honestly more afraid of the needle than anything she could say.

I looked up at the nurse and said, “I’m scared. Pretend I’m seven!” 

She took a physical step backward and just stopped for a second. Then my oncology nurse slowed everything down. Every aspect of connecting my IV to my new port was explained to me. By the time she accessed my port, I wasn’t afraid anymore. I didn’t expect the little gasket inside my port to rebound with a click, though. That was a weird surprise. Still, telling the nurse I was afraid helped me cope.

When I had my Dexcom trial, I was intimidated by the insertion device. Again, it involved a long needle and I didn’t know how much it would hurt. Once again I told the nurse I was afraid, and once again I received the care I needed.

Adults aren’t immune from fear and pain. We’re not immune from feeling vulnerable and out of control. Unlike children, who rely on their parents to speak up for them, adults need to advocate for themselves. I’ve learned I can speak up and say what I need. Sometimes I need to be treated more gently. Sometimes I need to have things explained in more detail. Every time I speak up, I get the care I need.

Advocating for ourselves takes practice. Here are some things I've learned.

  • If you feel intimidated, acknowledge it. It is natural to feel intimidated in a medical setting. The only people who aren’t intimidated are the staff who work there.

  • Start Small. Choose one aspect of your health care that could be improved with a simple change — like a different needle type or size — then ask for it.

  • If you don’t understand something, ask for an explanation. A routine medical procedure is routine for the staff, not the patient. Medical procedures can be unfamiliar and sometimes painful. Not knowing what to expect adds fear of the unknown to an already difficult situation.

  • Trust your instincts. You are the expert on how your body works and doesn’t work. What helps 99.99% of people may still not help you. When it comes to your healthcare, no one else knows you better. Trust yourself.

  • If you need something different, ask. You might get it. Last week I asked my doctor if I could get an insulin pump. Now I have an appointment with my CDE to teach me about my new pump, all because I asked.

What have you learned about advocating for yourself?

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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