Rare disease patients don’t live the typical life of the general public. Going to the doctors over 3 times a week is not out of the ordinary. Having a larger medicine collection than makeup was never second-guessed. Going to sleep over going out is often an easy decision to make.
We spend the majority of our lives waiting for the other shoe to drop. While we are hopeful for a cure, or even just a treatment that might ease the symptoms, we often find ourselves disappointed. Going to the doctors involves keeping a detailed log of everything that has changed since the last time you saw them, which may have only been a week ago. Before the doctor walks into the room, you already know the majority of what will be said since you have heard it over and over again, but at the same time you fear the words that could be said.
Many of our diseases are progressive, debilitating, and all-around exhausting. Most of our lives are spent thinking, “I wish I could” or “If only,” but until we hear the words “You can’t” we need to continue to DO. Sometimes we become so overwhelmed in living the rare life that we forget to live a fulfilling life. There is no denying that our time as human beings are limited in general. Those of us rare beings may be serving even shorter limited time; so there is no point in not taking advantage of every opportunity, every joyous moment, and every precious second of life.
You never want to wake up one day and think, if only I followed my dreams while my health still allowed me to...I’ve lost my shot. Through seasoned rareLeaders and other patient advocates we have bonded with and developed lasting friendships with, we can see the progression and various stages of our diseases. This bonding provides us with the insight to learn what the progression of our diseases look like and what our future bodies will go through. This gives us a slight advantage to prepare for what is to come. Instead of dwindling away into the misery of what may be lurking around the corner. It is important to embrace the things we are capable of accomplishing TODAY.
You might not be able to walk forever...jump on a trampoline...climb the stairs to your favorite monument (that hasn’t caught up with the times of being accessible)... walk on the beach. Your eyesight may be abandoning you. Take in the images you want to remember and store them to memory. See the people you love the most and memorize their faces. Always wanted to go to Disneyland? Plan that to take that trip now! Surprisingly Disney will actually help accommodate for any disabilities to make your trip doable and enjoyable. Fear you may not be able to travel much longer? Travel the world. See the places you want to see and do everything you’ve always wished to do.
Live with no regrets. There is not enough time to conform to the standard social norms of the world. Don’t be afraid of people judging you for being extravagant, spending money you don’t have, or doing things they are afraid to do themselves. The only opinion that matters is your own. You will have memories that will keep you going through the hard times. You will be able to say you lived your life on your terms. Perhaps, some of those dreams are already impossible to accomplish. We know as rare patients that we are nothing if not adaptable. Adapt your dreams and make them possible. Identify the things you still can do and make them happen. When pursuing your dreams, you naturally will have to change and adapt. If you stick with it, you will find yourself at home wherever you end up.
It can be exhausting being rare, so enjoy life to the fullest, even if that is simply a matter of eating your favorite cereal one last time. Dreams don’t have to be big, but if there is a way to do it, fight to make that dream your reality. Blaze Therapeutics encourages the people of the rare disease community to dream big, and to follow those dreams! Take your first step today.