by: Paige Lennox
We don’t know what we don’t know. Knowledge is power. Especially when it comes to your health and the options open to you for treatment. This is where a Health Advocate can play a crucial role in helping you become an ‘empowered patient’ or ‘empowered caregiver’ for that matter.
How Can a Patient Advocate Help Me?
The Patient Advocate does not simply take over the decision-making role of the doctor. They listen, take notes and answer questions. The Advocate helps you find resources, even the tough financial ones.
And when you leave your doctor’s office with your head spinning, they’ve got you covered. With your Health Advocate’s help, you can feel more in control and empowered.
What is Empowerment?
The World Health Organization defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health.” Empowerment is not simply about feeling strong when you are weak; it also includes:
The confidence to change your situation
The ability to get what you need from the people around you
Being empowered is important. It allows you to focus the right amount of energy on your health and wellbeing.
Beyond having an empowered mindset, there are specific actions you can take.
Here are the top five steps:
Gather information about your condition
You may sometimes feel that your doctor is too busy. In all likelihood, you’re right. But your doctor also wants to focus on your treatment. That’s why they will appreciate your efforts to understand your condition.
Here’s where you can find credible information:
Rely on your Health Advocate as a primary source of information and recommendations
Pick up brochures in your doctor’s office
Enlist a librarian who is trained to help you find health resources
Explore online sites like MedlinePlus and Healthfinder
Google your disease for information from government agencies and research hospitals, such as the Mayo Clinic
If you don’t understand what you are reading, your Patient Advocate can help find another reference. Your research will make it easier to have clear conversations with your doctor.
Again, ask your Health Advocate to jump in when the words fail you. They can help communicate the right message to the right people, whether it’s your doctor, your family, or your employer.
Understand and take responsibility for your treatment
Every situation is different, of course, but there are usually options available for treatment.
The treatment decision should be a shared one. If your doctor fails to clearly outline all your choices, respectfully ask why. Part of being empowered is knowing your choices.
Questions to ask your doctor. Specifically, you should know:
What are the pros and cons of each option?
Is treatment necessary?
How will treatment affect me?
What are the risks and side effects?
What can I do to mitigate the risks?
What are the next steps?
Understand, also, your out-of-pocket costs and whether or not there are alternatives, i.e., non-medical treatments that can complement your doctor’s efforts.
Your important job
Once the treatment protocol is underway, empowerment means that you do all that you can to ensure its effectiveness. You and your Patient Advocate have an important job to do:
Follow the instructions as they are given
Provide your doctor and loved ones with the feedback they need to help
When you don’t understand, your advocate can put your mind at ease by providing additional information and helping you follow your doctor’s instructions.
Take good notes. Keep a notebook so that during treatment you can prepare in advance of every appointment. In your notebook, track the following:
Keep an accurate diary of your medications and dosages
Note your symptoms, both the onset and the duration
Record your test results
Write down questions you have for your doctor.
Bring this diary with you to your appointments so that you can go over the information with your doctor. Your advocate can read from the diary if you are upset. If you feel rushed and require more time, ask for your Patient Advocate’s help.
Build a trusting relationship with your team
“Empowerment.. requires.. doctors to come down off their pedestals and.. patients to get up off their knees,” according to a 2016 study published in the Journal of Clinical and Diagnostic Research.
As much as we would like doctors to have all the answers, they aren’t infallible. They need you to help them get it right. Here are a few ways to do this:
Form “Team You” with your doctor and Patient Advocate.
The doctor is the expert in their specialty
Your Health Advocate can cut through the administrative red tape and speak on your behalf when you are unwilling or unable to do so
Pay attention to what your body tells you and provide information to your team
Let your doctor know that you appreciate them.
Doctors are not all-knowing. They make mistakes, have limited resources, and may struggle to understand the best course of treatment for you
Like everyone else, your doctor likes to hear appreciation. Your kind words could make all the difference.
Avoid letting anger cloud your judgment.
You can facilitate the process by maintaining your cool. This doesn’t mean you shouldn’t share your honest and informed opinion
Let your Patient Advocate speak when you cannot. Candid conversations help build trust and mutual respect. You are stronger together
Create a support network
As much as your family, friends, medical team, even your Health Advocate support you, there is no substitute for others who are living your condition.
Fortunately, you can find almost anything online. There are support groups for everything from panic attacks to Crohn’s Disease.
How to find a forum
Check out HealingWell and PatientsLikeMe. Look for additional forums or discussion groups by typing the disease into a Google or Bing inquiry. Your Health Advocate may know of many others as well.
Here’s how to get the most from your group:
Be honest and respectful when sharing
Treat these relationships with care; both give and receive
Offer support to other members
Verbalize appreciation when others offer you support
Forums provide a good place to understand more about your disease and its impacts. You will find peer support and increase your personal resilience. You will also discover new resources, current research, and share inspiring stories.
Forums don’t replace medical advice. If anything you read seems questionable, don’t hesitate to ask your Patient Advocate or your doctor. Forums are not meant as a substitute for proper medical advice and attention.
Embrace all of your emotions
“You can’t be brave if you’ve only had wonderful things happen to you.” Mary Tyler Moore, an American actress
You will not feel your superpowers everyday, and that’s okay. Part of life’s journey is coming to terms with our own vulnerabilities. This illness may have momentarily knocked the wind out of you, but even still, you have choices in how you handle it.
The good and the bad
Some days, you may have to pep-talk yourself out of bed, game face intact. Other days, you really are alright. Pay attention to what your emotions are telling you. Now is the time to focus on what you need, whether it’s more information, a hug from your children, or the gentle support of your Health Advocate.
It’s Your Choice
Build a team that will support you today and every step of the way. Take time to understand your disease and acquire knowledge that will serve you down the road. Your medical doctor and your Health Advocate are there to lend a hand. On your own terms, you will be able to cope with the medical issue and move through this period of your life with grace.