Finding Support in the Unlikeliest of Places

When navigating a complex and often exhausting medical journey, finding support can sometimes feel like searching for a needle in a haystack. For many of us living with chronic illnesses, the thought of turning to our insurance company for help might seem counterintuitive—after all, aren’t they the ones we usually battle for approvals and coverage? But in my experience, I found support in the most unlikely of places, and it has made all the difference in my journey.

Discovering a medical team that uplifts and supports

My path to finding the right medical team has been fraught with challenges. With Myasthenia Gravis and other underlying conditions complicating my case, finding a surgeon willing to take on the risk was a Herculean task. But eventually, I found not only an amazing surgeon who listened and empathized with my needs, but also a team of supporters who have become my cheerleaders.

One of the most surprising sources of this support came from my insurance company, Anthem Blue Cross. They offer a Family Patient Care program designed specifically to support patients with chronic illnesses and their families. Though my first patient care advocate wasn’t the right fit, I didn’t give up, and my persistence led me to an outstanding advocate who has become an essential part of my care team.

The power of a supportive advocate

My patient care advocate has spent countless hours listening to my journey, understanding my needs, and working diligently to help me achieve my goals—both realistic and aspirational. She coordinates a team that facilitates referrals, pre-authorizations, and communication between my medical teams and support providers, including durable medical equipment companies. Whether it’s securing a custom leg and back brace, obtaining the right respiratory equipment, or navigating the complexities of getting the right medication, my advocate and her team have been there every step of the way.

A year ago, I might have tried to handle everything myself. But managing a chronic illness is exhausting, and the demands of balancing medications, securing referrals, and keeping up with the logistics of care can quickly become overwhelming. Accepting help has not only lightened my load but also allowed me to focus on my health and well-being.

Overcoming medication hurdles with a strong team

One of the biggest challenges I faced was obtaining approval for my current medication, Vyvgart. As a seronegative patient, getting this medication approved was no small feat. We encountered hurdles when my medical team sought to adjust the dosing schedule based on a study showing its effectiveness when administered more frequently.

Despite initial denials, my nurse coordinator arranged for a peer-to-peer review, and we eventually got the new dosage approved. There were even moments when logistics threatened to delay my treatment, but my nurse coordinator worked her magic, ensuring my medication was delivered that very night. This kind of support has been life-changing—I’m finally not my own quarterback, and it feels incredible.

Advocating for yourself: The power of asking for help

I realize that not all insurance plans offer programs like this, but more are starting to. I urge you to call your insurance company and ask if they have any patient advocacy or family support programs for complex medical cases. If they do, reach out and engage with them. Be prepared—have your medical information, goals, and desires ready to discuss, both small and long-term. Dream big, but also be detailed about how your day-to-day life is impacted.

Establishing a great relationship with your team is crucial. Show them who you are—your challenges, your perseverance, and your commitment to your health. Invite them to walk alongside you as you navigate this medical odyssey. By doing so, you open the door to a partnership that can help you regain some strength and control over your daily life.

Conclusion

Support can come from the most unexpected places, and finding a medical team that uplifts and embraces you can make all the difference. My journey has shown me that asking for help and being open to support can transform your experience. I hope that by sharing my story, I encourage others to seek out the resources available to them, to dream big, and to continue advocating for the care they deserve.