Your Biggest Superpower
Elyse Newland is an Occupational Therapist who loves her work but is frustrated with the state of U.S. healthcare. She works specifically with stroke survivors and continues to explore ways to route around the system to get survivors the resources they need. Elyse makes stroke information and treatment simple via her weekly blog post on her website and her weekly YouTube video. She also provides teletherapy for stroke survivors in TN, GA, NC, OR, and CA. You can find her at https://elysenewland.com/Self-advocacy is one of the best things you can learn to do for yourself (or advocate for your loved one). It can also be one of the most difficult.
It’s difficult for a few reasons. It can be hard to push back against a healthcare professional if you see them as the expert. If you’re a people please (like me), it’s easier to just accept than push back. If you don’t like confrontation, it can be uncomfortable to rock the boat.
But in today’s healthcare system, at least in the U.S., self-advocacy is a necessity.
What is self-advocacy?
Self-advocacy is the ability to represent yourself assertively to get your needs met. Now being assertive doesn’t mean that you have to be aggressive. It also doesn’t mean verbally attacking your healthcare professional.
It’s being forceful or confident in your language. That you push for what you need. This also applies to loved ones who may be advocating for survivors who are unable to advocate for themselves.
As I mentioned before, self-advocacy doesn’t come easily to everyone, but it’s necessary to ensure that your needs are being met.
Why is it so important?
Healthcare providers have limited time with clients, and you have specific needs. Those two don’t often mix.
While I believe that the majority of people go into healthcare due to their desire to help others, the system in which we work makes it difficult to practice holistically. A doctor may only be scheduled to see you for 15-30 minutes. A rehab therapist or counselor for 30-60 minutes. That’s not a lot of time.
I’m only speaking from my experience in the U.S. healthcare system, but sometimes it can feel like you’re just another number rather than a person. The responsibility of scheduling appointments, following up, etc., is on the patient rather than the healthcare provider.
If you don’t call to check how your referral, scheduled procedure, or test results are moving along, you may not get an answer. If you don’t come prepared to advocate for yourself, your needs can slip through the cracks.
How can I maximize my advocacy?
Bring a list
You may have thought of every question you want to ask, but you get in the appointment room and… Poof! They’ve all left your mind.
Write down your questions either on paper or on something like the Notes app on your phone. This will ensure that you’ve got your questions ready to go. I usually encourage making a digital list if you can because it’s easy to forget a piece of paper lying on the kitchen counter.
If you write down your questions and ask them, you won’t feel like you’re fumbling around trying to remember everything. It will give you confidence knowing that you’ve already thought your questions through. Remember to ask questions even if they may seem silly or unimportant.
Write down your symptoms
This is a biggie. Again, you can make a list of symptoms on a physical or digital list. Writing down the symptoms you’ve experienced since your last appointment will help both you and your healthcare provider.
There may be patterns to what you’re experiencing that you or your provider may only notice by taking notes. It also keeps you from forgetting important information when you’re at your appointment. It can be easy to become flustered if the provider goes off on an explanation. You can forget what you wanted to share.
Clarify
When you’re in the appointment, don’t be afraid to ask your provider to clarify. Doctors, therapists, and nurses, unfortunately, have a tendency to speak in medical jargon. This doesn’t help you as you’ve likely never taken a medical terminology class. If they use language you don’t understand, ask them to explain.
Also, if you’re provider adds a new prescription to your medication regimen, ask them to clarify why. If you don’t understand what the medication is for, how often to take it, and how much to take, you may end up not taking something vital to your health needs.
Know the plan
If your healthcare provider schedules a follow-up appointment or refers you to a specialist, know the plan. For a follow-up appointment, is there anything you need to bring? Is it just a check-in, or will there be lab work/imaging?
For a specialist referral, ask if you need to call them or if they’ll call you. Ask if you should hear from the specialist within two weeks. If you haven’t heard from them by then, should you call? What should you expect from the specialist?
If you didn’t know to call the specialist or expect a call within two weeks, you could be waiting months to hear from them.
Follow up
If questions come up after your appointment, follow up with your provider. You can call and leave a message. Some offices even have text messaging systems or internal email through a patient portal that allows you to get in touch with your provider quickly.
Ask the provider or office staff what the best way to communicate is.
Aside from questions, if you were supposed to be scheduled for a procedure or imaging and never got a call, follow up and ask. Call the office to let them know. It’s common for these things to fall through the cracks. If you’re not asking questions, the provider or office staff likely won’t notice.
Find a new provider
If all else fails and you still feel like your needs aren’t being met, find a new provider.
We’re taught from an early age that “the doctor knows best,” or for that matter, any healthcare professional: nurses, physician’s assistants, therapists, etc.
My fellow healthcare professionals may not like me saying this, but that’s not true.
Healthcare professionals are indeed professionals and experts at what they do. I don’t want to diminish that.
However, you are the expert on yourself. You know when something isn’t quite right. You know your own body and mind better than anyone else. You also have the right to question any treatment that a therapist, physician, or nurse asks you to do.
Healthcare should be a collaborative effort. Your healthcare team should work with you and listen to you. Sometimes that requires that you repeat yourself or ask lots of questions. Sometimes it requires that you seek out another clinician.
Do what you need to do to be heard.