Madeleine Boyson is currently on a second hiatus from pursuing a degree in history in an effort to better treat her Lyme disease. Her time away from school has led her to seek out a healthcare community on social media. After noting the positive health benefits of social media in a TEDx talk, Madeleine joined Peer Health as a Patient Advocate, to help improve Peer Health for patients like herself and to create a better-connected healthcare system.
Welcome back! Last week, I detailed the first three steps in a patient journey. And, today we’re going to explore the remaining ones, finishing our patient journey together.
4. Treatment Plan
This can often be the longest and most complicated step in a patient’s journey. Armed with a diagnosis, you might feel ready for anything—and you are. For some, simply improve your diet and increase exercise. For others, be ready to frequent doctor’s’ offices, tweak protocols, try new medications and throw out others, get better and get worse, and try to manage a life in between it all. @FrizzKidArt, a contemporary artist, says, “Healing is not linear,” and this is an essential reminder in this step. Knowing ahead of time that healing requires flexibility and courage will make things more bearable. Celebrate the triumphs in treatment. Grieve the low points. Share your experiences with others because odds are, they’ll help guide you through it. You’re nothing if not up to the challenge!
The financial burden of a patient journey will affect everyone differently because, in the American healthcare system, some families are far more equipped to pay for treatment than others. One of my Lyme Loves said this was unquestionably the hardest aspect of her journey: dealing with treatment-related debt had nearly consumed her family because care was too expensive. Some of us have quit jobs because we are too ill to provide for ourselves. Some of us have benefitted from the Affordable Care Act; others have relied on independent insurance companies. But the most important thing we’ve learned is self-advocacy, especially when it comes to paying bills. Don’t procrastinate the paperwork and keep an eye out for ways to keep costs low. Don’t pay the first hospital bill that arrives and questions individual charges! Use GoFundMe or other online campaigns to help you raise money for big expenditures like surgeries. And remember, your health care community cares.
6. And Speaking of Self-Advocacy…
It’s possible that a patient journey is less like a staircase and more like looping mountain trails. My Lyme Loves pointed out the essential interwoven “steps” in their experiences, steps they keep coming back to emotional healing, community, and personal advocacy. One Lyme Love noted a balanced mental state positively affects healing, which allows her to better deal with treatment. Emotional healing is vital to physical healing and accepting grief and joy when they appear and reappear will ease your way. Equally vital is finding community. Talking with others who share your experiences can be healing in and of itself, so keep coming back to your own “Lyme Loves”. Help them heal and they’ll help you. Lastly, learn to fight for yourself. Your body is fighting illness, so why not join in? Speaking up, asking questions, doing research, and making suggestions will only benefit you in the long run, and not just with doctors and insurance companies either. Advocate for your health in everyday life and you’ll not only raise awareness (and possibly research funds!) for your disease, you’ll also constantly remind yourself that you are capable and powerful and brave. There’s healing in that, too.
Peer Health can connect you with a personalized peer community to share provider recommendations, treatment options, and define your best life. The Peer Health community is coming soon and we want you to be the first to know. Sign up for our newsletter today.