Patient advocate Anna Legassie offers advice on how to be an empowered patient.
What does it mean to be an empowered patient?
Some picture a patient on Grey’s Anatomy giving a dramatic monologue to doctors who eventually admit they’re wrong and acquiesce to the patient’s choice of treatment.
The truth is it’s rarely that dramatic. In my experience, being an empowered patient means being in the driver’s seat of my treatment — informing all of the decisions that my team and I make.
How can you become an empowered patient?
When you’re newly diagnosed, Googling your disease can be terrifying and overwhelming. But, when you’re ready, it helps to dig in and do the research. One time, I had a sore throat that grew to include more serious symptoms. It seemed unrelated at first, but the issues I was experiencing were directly related to my rheumatoid arthritis.
I should have been seeing my Rheumatologist – not an ear, nose, and throat specialist! Since then, I’ve worked to educate myself to be aware of uncommon disease manifestations, medication side effects, new and upcoming treatment options, available clinical trials, complimentary therapies, etc. Even if your doctor is an expert in the field, our health care system isn’t designed to with proactive treatment in mind. Many of us get very short appointment windows with our specialist(s) which often leaves us prioritizing emergent issues over the possibility of pursuing a clinical trial.
Sometimes a treatment may appear to be effective when your labs are good, but that doesn’t tell the whole story. Neither does the pain scale. Telling my doctor my pain has consistently been a seven for weeks on end means very little. But, when I tell her I haven’t been able to go to yoga for several weeks, she immediately knows something is up and that we may need to adjust our course of action.
As an athlete with arthritis, I’ve worked hard to make my doctors understand that my treatment plan needs to support my athletic goals. What if you’re not an athlete? What are things that you would like to being doing that your illness interferes with? Would you like to work in your garden? Sit through dinner and a movie more comfortably? Your doctor needs to hear those things and understand what’s important to you so you can work together to improve your quality of life.
It’s as simple as saying, “My current symptoms are preventing me from doing XYZ. What can we try to do so that I can get back to doing XYZ?” It may take a while to coach your doctor on this way of thinking, but it will pay dividends in the long run.
The hospital where I see my specialists schedules appointments in 15 minute increments. Let’s be serious for a moment: when you have a complex autoimmune disease and only see your doctor quarterly:15 minutes is NEVER enough time to cover three months’ worth of symptoms.
I prioritize accordingly. I make a list of things I’d like to cover before each appointment including detailed notes for myself so I don’t forget anything once I’m in the exam room. Even then there are times I’m not able to get through everything. That’s why I always dive in and tackle the most critical issues first. Thankfully, my rheumatologist allows me to email her, so we’re able to have an ongoing dialogue in between appointments.
If your doctors are open to email, take advantage of this access to them! There’s the opportunity to follow up after an appointment, or address any new questions since.
Once you feel like a confident expert in your health and diagnosis, you will be able to rely on that expertise to advocate for yourself when the healthcare system fails you.
In my experience, this has allowed me to fight (and win!) against my insurance provider when faced with step therapy, prior authorization, and other barriers to care. But sometimes it’s not just our insurance providers that fail us – it can be our doctors brushing off our concerns, or friends and family doubting the severity of our illness.
While these slights often feel very personal, most often they come from a place of ignorance or a lack of understanding. Part of advocating for yourself is being able to dispel these myths and disbelief with facts about your diagnosis or treatments. This is where all that research comes into play! And, while it may not always have the outcome we hope for, being able to educate others – whether they’re doctors, friends, family or employers may prove valuable for other patients in the future.
I’ll be the first to admit it: being an empowered patient and advocate can be daunting – never mind exhausting.
Through my advocacy work, I have been struck by how many patients want to be more empowered in their care, but don’t know where to start. Which is to say nothing of all of our fellow patients who are struggling to get there care they need let alone being able to speak up on behalf of others.
There are many different ways to advocate on behalf of others – whether it’s taking these issues to your elected representatives or working to create more awareness about rare and often overlooked diagnoses. No matter what your passion is, you will have the most success once you have empowered yourself to take control of your health and get the care that you need.
About the Author: Anna Legassie
Anna is a patient advocate, writer, and athlete living with Rheumatoid Arthritis (RA), Pericarditis, and multiple joint surgeries – including bilateral hip replacements. She works in management consulting and has leveraged her professional experience to serve as a patient adviser to health startups, pharmaceutical companies, and other health organizations. Anna lives in Boston with her partner and their rescued chocolate lab, Penny, where she enjoys the local food scene, training for her next race, yoga, and cooking. You can read more about Anna’s patient journey on her blog Six Hips and Counting.
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