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.
What is a “Patient Journey”? For the luckiest healthcare beneficiaries, a patient journey is simple. The word “journey” even denotes a resolution. New symptoms? Schedule a doctor’s visit, receive a diagnosis, get treatment, and resolve outstanding payments. But for other patients, the healing process is more like Odysseus’s ten-year trek home; it is an Odyssey without a clear end. So what can you expect when you experience a patient journey for yourself? Is it possible to objectively enumerate each step on the often long and winding staircase toward health? I turned to some of the patients in my own healthcare community, those friends I call “Lyme Loves” who deal with chronic Lyme disease like I do. We asked ourselves, “What does a patient journey really look like?”
- Symptom Onset
This is where the journey begins, and it is all at once the simplest and the most confusing step. You’ve started feeling headachy or inexplicably tired or your menstrual cycle more painful than before. Maybe symptom onset isn’t at all clear and it takes months—or years!—to recognize that you’re dealing with far more than stress or daily wear; you’re actually dealing with illness.
- Doctor’s Appointments & Personal Research
Next, you’ll seek out a professional opinion or two. Some patients live with their new symptoms for a while before “breaking down” and finding a healthcare provider. Others show up at their doctor’s office at the very first sign of pain. Regardless of how you operate, you’ll find yourself in a clinician’s office at some point. And, almost immediately, you’ll know if you’re in for a smooth or bumpy ride. Doctors can often find easy answers and provide solutions in the first appointment. But other times, with more obscure—or simply less researched—illnesses, patients find that doctors don’t believe them, don’t want to test outside the norm, tell them it’s in their head, or send them to another doctor altogether. Patients often find that supplementing doctor’s visits with their own research helps them get the best care they can by helping them relentlessly pursue answers. One of my Lyme Loves saw 54 doctors before she received a diagnosis. You are the primary source for your body; listen to your gut and keep pursuing quality healthcare. You’ll thank yourself in the end.
- Test and Diagnosis
Once you’ve found a doctor who listens and helps figure out your unique symptom puzzle, a positive test result and an official diagnosis can be truly welcoming. You might receive incorrect diagnoses at first, or you might be successful in getting the right diagnosis right away. Testing may involve a few too many blood draws, but as my mother always says, “knowledge is power.” Fighting for the right diagnosis will only serve you well. The remainder of your patient journey can seem daunting from here, but it’s also hopeful. Try to balance both feelings as you move forward.
Next week, Madeleine will take you through the next steps of a patient journey. Keep your eyes open for A Patient Journey, Part 2!
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