How to Advocate for Yourself in the Healthcare System
- It’s wise to ask questions - no one is as invested in your health as you are. Trust yourself.
- Acknowledge the discomfort you may feel while remembering that the more you know, the more empowered you become to make your own decisions.
- Having someone in the appointment to advocate both with you and on your behalf is a great way to ensure your questions — and voice — aren’t left behind.
Whether you’ve just received a medical diagnosis or you’re making your way through a maze of different providers, insurance policies, and doctor lingo, navigating the healthcare system can be hard. Especially because when it comes to our health, emotions like fear and anxiety can run high.
Now you may be thinking: Heightened emotions on top of a confusing system and then tell me to advocate for myself!? It sounds like a tall order, but you’ve got this. To help us make sense of this complex process, we turned to Katie Nicole, LCSW, Director of Community Health for Planned Parenthood Northern California.
First, as we mentioned, navigating the healthcare system is complicated. Have you ever scheduled a doctor appointment only to be told you need to see a different type of specialist, or multiple providers across town? Or you simply don’t understand what exactly your doctor is testing you for? Or you are asking about something specific and feel like that issue is being ignored or brushed to the side? Unless you’re a medical professional (and maybe even then!), you can probably relate to at least one of these examples.
There’s something inherently vulnerable about not being in full control of a situation. With healthcare, as patients, we rarely are.
Katie says, “Ask for what you need. Be honest with yourself and with your provider.” This can be as simple as, “I don’t understand what we’re testing for with this bloodwork, can you please explain it to me?” It can also be highly personal, like a cancer patient asking her doctor for fertility resources ahead of starting chemotherapy because she knows she wants to have a family one day. Of this example, Katie says, “It’s vulnerable to say, ‘I still want to be able to have kids and I’m empowered to fight this cancer.’ The two can co-exist.”
Whether you’re asking for help, clarification, or advice, these questions can make us feel like we’re leaving the driver’s seat of our own life.
Acknowledge the discomfort you may feel while remembering that the more you know, the more empowered you become to make your own decisions.
Trust your gut when it comes to providers
It’s wise to ask questions - no one is as invested in your health as you are. Trust yourself. Katie says, “Trust your spidey sense. If you’re not connecting with your provider, you can switch. Ask yourself: Do I trust this person? Am I OK being under the care of this person? You may not be OK with the news [or diagnosis] and you may feel overwhelmed and fearful, which are normal feelings. But are you OK with this person being involved in your care? Do you feel like you’re in good hands?”
If the answer is no, you’re always entitled to ask for a second opinion. Your providers should encourage you to get a second opinion if it will make you more confident in your decisions. Their goal should be the same as yours — to ensure you have the best possible care and feel good about your plan. It’s very important that you feel heard and supported by your provider.
Do your research
You’ll feel more comfortable both asking questions and having them answered once you’ve done your research. This can feel overwhelming, but start small. Maybe you’ve had an abnormal Pap smear and you’re waiting for a follow-up appointment with your doctor. In this case, “research” can ensure you understand what a Pap smear is. There’s no need to go down a rabbit hole with Dr. Google, just knowing what the test looks for, or what the symptoms may be is enough to get you on the same page as the doctor for your later conversation.
Once you’ve done that research, Katie recommends writing down your questions. “You’re going to forget because so much is swirling around in your head,” she explains. “Go with intention; ask yourself, what really matters to me?” In the example with the cancer patient and fertility treatment, her answer might be that family matters most. In thinking through beating cancer in order to enjoy life with her current and future family, it makes sense that fertility preservation would come up, and would be an excellent question to ask her doctor.
Sometimes, research may not have to do with a particular condition, but rather understanding an insurance question or what’s involved in making a decision regarding an elective procedure. Either way, having at least a better understanding of the matter at hand will leave you feeling empowered to ask questions of your provider, insurance carrier, or anyone else you may seek advice from in the medical field.
Once you have your questions, grab a trusted partner, friend, or family member. Katie says, “When you’re emotionally dysregulated — flooded with emotions, super overwhelmed, or feeling as though the emotions are bigger than the issue at hand — your brain can only hold so much.” Having someone in the appointment to advocate both with you and on your behalf is a great way to ensure your questions — and voice — aren’t left behind.
And if you aren’t able to physically bring someone to your appointment, then thank goodness for technology. Ask your doctor if you can have someone join via Zoom, FaceTime, or even a phone call. And if no one in your support network is available, consider joining an online community or support group. If you don’t know of one or can’t find one, ask your healthcare provider and they will be able to point you in the right direction.
Whatever it is you’re going through, you are your own best advocate, even if it may sound like a daunting task. By acknowledging the vulnerability of the process, doing your research, trusting yourself, and building a network of support around you, you’re well on your way to getting the answers — and care — you deserve.