A Letter to My 10-Year-Old Self With a Rare Illness

Dear Mara,

I wish I had the words to ease all of the confusion, fear, and pain and that you will experience over the next 15 years and beyond. I wish I could tell you the doctors are right, that your troubles keeping up on the playground are just from being out of shape, but I would be lying to you. In actuality, your physical symptoms mark the beginning of a life-long journey of navigating disability and rare, chronic illness. At age 25, I feel as though I am just beginning to learn how to cope with the challenges of our illness. Still, time and reflection have helped me to better make sense of this strange journey. Although I don’t know the answers to all of your questions, I hope to share some lessons you will soon learn to make your battle a little less scary.

You may be little, but you are mighty. At age 10, you think your mightiness comes from being able to run the fastest, jump the furthest, and climb the highest of all your friends. You will soon learn that these are only a few measures of strength.

As you get older, your physical strength will lie in being able to breathe through the unimaginable pain and to hold your head up through severe nausea and dizziness. You will demonstrate your mental strength as you stay grounded during years of the unknown. Your emotional strength will carry you through the reality of the known. Your body does not work the way other people say it should, yet it will teach you lessons at a young age about your strength to endure that many people may never know.

Trust yourself. When your body tells you that it needs medical attention, listen. Capture that voice in your head right now that says that you know your body better than anyone else. Keep holding onto that voice with all of your might, even when the grownups tell you that you are wrong. You will see dozens of specialists over the next 15 years as your disease progresses. Unfortunately, some of those doctors won’t listen to you. Some will tell you that your symptoms are “all in your head,” and others will say that your symptoms are “too small to matter.”

Let your inner voice be louder than other people’s doubts.

You are your best advocate.

Fight, keep fighting, and don’t give up. Your persistence is what ultimately saves your life. It turns out that your strange symptoms are actually real and fairly serious. At age 22, your journey will take a new path from fighting for a doctor to listen to you to fighting for your life. After seeing many doctors over many years, you will finally find one who believes you, trusts you, and supports you. Although your disease still remains a mystery to your doctors today, you will be diagnosed with several secondary conditions that could have been life-threatening if left untreated. You will have learned that fighting means you get to live, so you better keep fighting. You can’t stop fighting yet, even when you feel like you have no strength left to fight. Fight for yourself, fight for supportive doctors, fight for answers, and fight for the life that you want to live.

Most importantly, know that you are strong enough to get through this.

Love,
25-year-old you