When Holidays Become a Marker of Disease Progression

When I was younger, before my disease started, holidays were a celebration of family and tradition that brought happiness and warmth. As I started fighting multiple sclerosis in my early 20s, they then marked a day of hope that maybe by this time next year, I’d be doing a little better. But the years passed on, like the wind on a bitter day; until holidays became a reminder of how I had struggled the year before, and how I was struggling even more now.

I try to keep my self-pity at a minimum, which admittedly is not as easy as it sounds. But on marked occasions, like holidays, I am given a brutal comparison of what a year means for my disease and my body’s abilities. Holidays, one year apart, draw an instant timeline of what it means to have a progressive condition. Whether I want to have self-pity or not, these reminders are thrown in my face by the memories from years prior.

I do still hold onto some hope for years to come, as our knowledge of medicine and the human body continue to improve with each passing holiday and every year that flies by. But, I’d be lying if I said holidays were full of joy and hope and health and happiness.  I know I am not alone in this notion, and so I want everyone who is in this position to know that it’s OK to feel sorrow during times that are supposed to be wonderful. It’s all right to look back and feel a sense of disease progression and a bit of helplessness over this inevitable process. It allows us to accept the truth and then move on in our journey.

I like to think of the holidays as another year around the sun for researchers to find new treatments, for geneticists to delve deeper into the mutations and genetic variations that cause disease, and for our scientific world to catch up with our bodies. I let the tears fall as I think of what I once could do that now seems so impossible. And then I wipe them away, and look towards what may be coming my way down this wild road of chronic illness.

To my chronic illness warriors, I hope this holiday season marks a turning point in your journey.  Whether that turn happens now, in five years, or in a decade, good things can come with time.