As someone living with a rare disease, New Year’s is my least favorite day. Amidst my twenty-something friends celebrating and exuberantly tracking time until the ball drops, I nervously count down until my annual medical screening routine starts anew, complete with countless doctors’ visits and procedures. You may call me the Scrooge of New Year’s but, don’t call me alone in my trepidations. This is far from out of the ordinary thinking for the herd of young adults dealing with rare disease that ring in the new year with me.
As we change the calendars, there are countless young adults wondering how their body will change in response to their disease and if the new year will bring new diagnoses. They grapple with the deluge of social media posts highlighting their successes and comparing life a decade ago to now which for some, demarcates a pre- and post-diagnosis life. Their previous year’s accomplishments may be measured in miles traveled for second opinions or simply managing to stay alive (which, by the way, is a huge success that should be celebrated!) instead of degrees acquired or exotic vacations taken. The optimism about the possibilities for the year ahead encompasses hope for better treatments and finally assembling the dream healthcare team that has experience with their disease.