Many people after cancer or some other illness often say “Be your own advocate.” But what does that entail?
Put simply, being your own advocate is the opposite of being a “passive patient.” A passive patient is one that takes everything their doctor says at face value. It’s one thing to trust your doctor’s judgement, but it’s another to accept everything they say and do blindly. Learning to advocate for yourself not only is a great way to share knowledge with others in a similar situation, but it can lead to a better quality of care from your health providers.
Here’s a few quick tips on being an advocate for yourself:
Do (some) research.
Now, I know what you’re thinking: Everyone always warns not to Google your condition…why are you telling me to do that? While I agree that it’s easy to fall down the search engine rabbithole (I’ve been there), some basic knowledge on how parts of your treatment work will really help in the long run. For example, if your doctor suggests a trial or medication, basic knowledge of how it works and a quick summary of side effects are good things to keep in your back pocket. It’s a scary thing when you have a new symptom come seemingly out of nowhere, but if you’ve done your research on your meds you can quickly figure out if it’s something new or just a side effect.
A word of caution: try to avoid doing research on days when you’re not in the best of moods. That will definitely make your feelings multiply rather than go away. (Trust me, I’ve done this way too many times.)
Be prepared and ask questions
If you’re not sure why you’re being submitted for a test, put on new medication, or anything your doctor is telling you to do, speak up! You have the absolute right to ask your doctor questions, and there’s no such thing as a dumb question when it comes to what’s happening with your body. Ideally, your doctor should let you speak first, ask some questions to get a better understanding of what’s going on, and then use that to come up with a solution, talking you through as much as possible. But we all know that’s a rarity since many doctors see multiple patients each day and may only have minutes to look at your charts. Make the most of your time with your doctor by being prepared for your appointment:
- Make a list of all the medications you’re on. You’ll usually have to write it down or give it to a nurse before you see the doctor, anyway. Be sure to include the doses for each if possible. And yes, this includes all forms of hormonal birth control! If you have an implant, you definitely need to let your healthcare team know about it.
- If you’re going to a follow-up appointment, make note of any symptoms you’ve noticed since the last appointment. Also keep in mind if it’s a side effect of a medication, which you would likely know by doing your research!
- If your doctor starts saying a bunch of words or concepts that you’re having a hard time translating into not-doctor, ask for an explanation. Doctors can sometimes get carried away with jargon and will keep going until you say something or until the appointment is over. Don’t be afraid to admit you don’t know what a word means; It’s important to understand everything your doctor says.
- Write down a list of any questions you can think of before arriving at your appointment. If you’re prone to forget things (hello, brainfog!), this will help you stay on track rather than just blanking out at the end of your appointment.
- If you’re on medication that’s checked regularly, ask your doctor what the goal is for you. For example, since I no longer have a thyroid and am completely dependent on synthetic thyroid hormone, my thyroid doctor wants my Thyroid Stimulating Hormone level (TSH) to be as close to 1.00 as possible. With that information, I can make note how I feel when my TSH is close to my target and recognize when something may be off. (Please note this is not typical for everyone that is on thyroid medication, this is my personal target keeping in mind my height, weight, and type of thyroid cancer!)
A couple of good ways to keep track of everything would be a small notebook that’s designated for your appointments or even just a memo in your phone. There are also several symptom tracking apps, most of which are free. Here’s a list of top 100 health apps for Apple and Android. (A lot of apps on these lists are period trackers, which are also good to use if you have periods.)
Share your story and learn from others
One huge part of being an advocate for yourself is also learning to advocate for others. This doesn’t mean you have to be your county’s top Relay For Life team – although if that’s your goal then good for you and good luck! It can mean just finding a community. The best advocacy lessons I’ve learned have all come from other people in the thyroid cancer and young adult cancer communities. Even a quick “so happy for your clean ultrasound!” or “I’m sorry you’re having a rough time right now” from a cancer or chronic illness buddy is enough for my day to get a little better. Once you find a community that works for you, it quickly becomes a place where you can vent and give each other advice based on what you’ve learned from each other.
Advocacy looks different for everyone. For some, it may just be bringing a list of questions to ask your doctor. For others it may be organizing a 5K to raise money for an organization that’s helped them through their illness. It may be a bit daunting looking at someone else’s example of self-advocacy, but everyone starts at different places. If speaking up at your doctor’s visits seems too much for you, start small. Try to ask one or two questions at each appointment at first, then build your way up as you get more confident in doing that.
The main thing about your health is that it’s about you, so it’s in your best interest to make sure you’re not a passive patient. Now get out there and advocate for yourself!
What self-advocacy tips and tricks have you found helpful?