Be a shameless self advocate
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| Ani DiFranco was talking about something else here but I go with what I got. |
I talked recently to my oncologist about this blog and the suggestions I gave people who have gotten in touch after a diagnosis. I said my top-line advice was "be a shameless self advocate."
"That's really good advice," she said.
Self advocacy is hard. I can't speak for others but I have had a tension my entire life between what my mother instilled in me (which can be boiled down to suffer in silence / don't make a fuss) and my inherent desire to advocate for myself.
At least in the US, the health care system is not built for individuals. I'm not sure who it's actually built for (insurance companies?) but doctors are overburdened. Appointments can be hard to get. Health care professionals won't have the time to be up-to-date on every aspect of your health record.
So we need someone in our corner...and realistically, no one will care about your own health as much as you do. Bleak? Maybe. But I've never been one to be good at sugarcoating shit.
What does this mean?
A few things.
- You deserve to understand what is happening to you. If you don't, ask questions. Take more time. Cancer is a big hairy deal and emotions can cloud your understanding. Ask and ask again.
- If your doctor doesn't listen or doesn't want to explain things so that you can understand them, get a new doctor. I've said this before, but you'll see these docs very regularly for 5+ years. It's important you trust them. I mentioned this to my own oncologist and she asked how a patient could trust a doctor that won't explain things to them, and it's a great question. A good doctor wants you to be in control of the treatment and understand what is happening to you.
- If you're not getting what you need, Make. A. Fuss. When I couldn't get my IUD out because one doctor fumbled it and they had no one else available for possibly a month or two, I made a holy fuss. I got an appointment and got it out within the week.
- Doctors are overburdened. When you email a doctor, be concise and clear. If you have questions or need help, email them! But keep in mind that being a doctor is a lot less caring for patients and a lot more dealing with administrativia than most MDs thought going in. I have no problem asking my doctors for things, but I try to only email when necessary. Of course, what's "necessary" can vary between people and even just across time. As I'm a bit further from my diagnosis, I send a lot fewer emails do my doctors than I once did.
- I'll note here that my doctors encouraged me to email. Your doctor may be different. Ask them what the best way to get a hold of them for questions is.
- I say you're the best person to advocate for you, but cancer is a big word. It can help to bring a friend or partner or family member along if they can keep a clear head, take notes, ask questions, etc.
- Many hospitals have a Nurse Navigator to assist patients. Find out if you have one. Mine was absolutely stellar. The Nurse Navigator is there to help you figure things out. Need an appointment with a doctor in a huge and daunting system? Mine helped me out. They are also there to help with logistical questions and to help if you're not getting the answers or attention you need. Mine was a calm, kind woman who I instantly felt I could trust. I was lucky that my care team was so on top of things that I didn't need much from her, but knowing she was there helped.
Breastcancer.org was a pretty good resource for me through all of this, and they have a handy article about communication with health-care professionals. Worth a look if this is on your mind at all.