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Take Charge of Your Health: Become Your Own Patient Advocate

How a battle with Lyme Disease taught me to step up and speak out.

lyme-disease-patient-advocacy

I’m a huge Marvel movie fan. I love watching these imperfect heroes in action and imagining what it would feel like to have superpowers. As an introvert more comfortable behind the scenes, I find it both an exciting and intimidating fantasy. Their super-strength and unique powers are impressive, but look closely, and you’ll see that it’s sometimes their inner-strength, choices and compassion that make them true heroes. Forget capes and mind control. This is exciting! Because this means that we each have the ability to be our own hero. And one of the most life-changing things you’ll do is use your power to bravely advocate for your health and wellness.

Become your own hero.

Practicing bravery in patient advocacy is something very close to my heart. Having been diagnosed with chronic Lyme disease, I’ve experienced first-hand the struggles and fears that go along with advocating for your health and medical needs. I had no choice but to learn along the way. What I learned, and the mistakes I made, changed my life.

The year before my diagnosis, I noticed a strange bull’s-eye rash on my arm while my husband and I were cruising the Eastern Caribbean. Never having seen anything like it, I took a picture and went back to enjoying my vacation. Once home, I made an appointment to see my primary care physician. I felt fine, and the rash had faded, but I vaguely remembered hearing something about bull’s-eye rashes and Lyme disease and wanted my doctor to see the photo.

I couldn’t get in with her, but did see another highly respected doctor in the practice whose opinion I trusted. Armed with my photo and questions, I voiced my concerns before he assured me that I had nothing to worry about. It was a harmless bug bite. If it were anything else, I would already have been symptomatic.

There was no need to worry, run tests or even think about it again.

I remained skeptical. I wanted to question his assessment but felt it wasn’t my place. He was the expert, and he told me it was no big deal. I thanked him and went home. I chose to forget about it.

Speaking up could have changed everything.

To this day, I think back to that very moment and cringe. It was a moment in which I should have spoken up but instead ignored my gut instinct and remained silent. A moment that, if handled differently, almost certainly would have led me down a more desirable path.

Rather than stepping up and being my own hero, I let myself down.

My fear of questioning authority and desire to avoid being labeled a “problem” patient overshadowed my inquisitive nature. Had I asked additional questions, researched my concerns and sought out a second opinion, I likely would have avoided the health nightmare that eventually followed. I suppose I should cut myself some slack as I was simply following the advice of a doctor who’d earned an excellent reputation. But here is why we all need to be more assertive and question even the most reputable doctor.

Not every doctor is an expert on every medical condition.

Lyme disease happens to be a controversial illness. Many doctors today are not experienced in effectively diagnosing and treating it. So it’s no surprise that, over a decade ago, I was wrongly assured that there was no cause for concern.

Don’t wait until it’s too late.

Had I spoken up and taken immediate action, I might have found useful resources that would have led me to a Lyme Literate Medical Doctor (one who specializes in testing, diagnosing and treating Lyme patients) before my symptoms even surfaced. Had that happened, I might have avoided becoming chronically ill and losing over a year of my life to a health battle.

A second chance to advocate.

The illness that I didn’t know was lying dormant in my body surfaced ten months later. It was like someone flipped a switch and I transformed from a healthy person to someone who looked and felt like she had narrowly survived an apocalypse.

My husband, pale with worry, supported my weight and kept me upright on unstable legs as he guided me into the waiting room of the same doctor’s office where I’d failed to speak up the year before.

The disastrous doctor’s appointment that followed was the first of many challenges I would face during the year-long health nightmare that ensued.

The doctor, a new addition to the practice who I was seeing for the first time, decided that my gray complexion, vision impairment, severe weakness, trembling, pain and overall inability to function were the result of what he called women’s stress.

It only got more infuriating and ridiculous from there.

Here was another opportunity to be a stronger, more confident patient advocate. I didn’t waste it.

Later that day, I called the doctor’s office and politely yet firmly expressed my frustrations. Making that call was the first of many increasingly difficult choices I’d have to make as I endured months of hospital stays, emergency room visits, way too many encounters with needles and appointments with numerous Bucks County and Philadelphia area specialists — all while my health steadily worsened.

Doctors repeatedly told me that my illness was all in my head (it wasn’t), that I looked fine (I didn’t), that I needed nothing but anxiety medication (wrong), that I was faking my illness (wrong again) and that I should feel guilty for the expensive tests that the insurance company had to cover (sigh).

I advocated for myself when I could, and my husband tirelessly advocated for me when I couldn’t. Our persistence paid off, and I soon found my way to the right doctors, an accurate diagnosis and an effective yet challenging treatment plan that would eventually get me into remission.

6 Ways to become your own patient advocate.

Many of us face similar fears and challenges when it comes to the role we play in our own patient advocacy. It’s time to put yourself first by more confidently prioritizing your health. Adopting these effective and powerful habits will get you started.

Speak up

Candid communication with your healthcare provider is key to receiving effective care. Don’t shy away from asking questions or voicing concerns. The more openly you communicate, the better your doctor will understand your needs. Any doctor worth having will gladly answer your questions and help ensure you leave your appointment feeling informed, confident and respected. If something about a situation doesn’t feel right to you, respectfully let your doctor know.

Build your dream team

You deserve doctors who prioritize your health, respect your opinions and provide you with high-quality care. If a doctor makes you feel like a bother or minimizes your concerns, waste no time looking for a new provider. Other red flags include: off-putting bedside manner, nearly impossible to reach, highly unorganized office with long wait times, refusal to coordinate with other doctors … it’s a long list.

Whatever your reasons, if it doesn’t feel right, it’s time to move on. Do your research, ask trusted doctors, friends and colleagues for referrals and make consultation appointments to ensure each doctor feels like the right fit. Aim to build your dream team before you’re in a health jam. This way, if you become ill or injured, you already have a reliable team in place.

Prepare in advance

Whenever you can, arrive to appointments armed with a list of questions, symptoms and concerns. Many people become nervous and forgetful at doctor’s appointments (guilty!), so preparing your notes in advance ensures you’ll stay on track and won’t miss the opportunity to discuss what’s on your mind. Remember to write down answers and recommendations.

Choose a backup

In the event that you’re unable to speak for yourself, you’ll want to pull in a trusted friend or family member who can competently advocate on your behalf. Reach out and ask this person if they’d be willing to step in if and when necessary. Having a backup in place before you actually need one will make things much less stressful should an unexpected situation arise.

Understand your health insurance plan

Your health plan might offer more than you think. Review your plan thoroughly (preferably when you’re feeling good) and get familiar with your benefits. You might find that you have access to disease management programs, complementary and alternative medical treatments like massage therapy and acupuncture and other valuable health resources.

This can be time-consuming, but it’s worth the effort. Once you have a handle on it, you’ll be able to more confidently navigate your medical care.

Trust your instinct

You know your body best. If you’re convinced that something isn’t right, keep seeking answers, and be prepared that those answers might not be what you expected. Be persistent, and don’t give up until you’re satisfied.

You have what it takes to become your own hero. The more you prioritize your health, the easier it becomes to step up, speak out and bravely advocate for your health and wellness. No cape or superpowers required.

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