This month marks 10 years since ankylosing spondylitis (AS) dramatically changed the trajectory of my life. If I could look my younger self in the eyes, place my hand on her shoulder, and speak words that would bring comfort, this is what I would say.
You are so afraid, and I want you to know you have permission to fear and flail and break. The pain in your body bewilders you, and you fear you’ll never receive validation for how profoundly and rapidly your life has changed.
I want you to know you never gave up.
At times you feel the uncertainty of not having a diagnosis or a secure path to treatment might make your soul crumble. It won’t.
You will survive the uncertainty. Learning to accept the unknowable nature of your illness will enlarge your soul instead of diminish it. Embracing the tension of living with pain while longing for wholeness will make space for you to know what many can’t see — that joy can coexist with pain. What you learn in the dark will create more beauty than you can imagine. Your pain will make you radiant.
But you don’t have to figure out the purpose of your pain for your life to be meaningful. Trying to parse out why you got sick and what the point of it is could keep you from seeing the good right in front of you. So, look up and live, even though your body sometimes feels like death. See the good right in front of you, even if it’s only the beam of sunshine filling the room you haven’t left all week. Feel its warmth, and let it fill you. Sickness will slow your life, but in slowing you will see the beauty others blaze past.
Courage is not simply something we possess but something we can cultivate. And
the courage you cultivate will be beautiful. Your assertiveness and determination to live well will get you the help you need to find a path forward. You feel stuck, but you aren’t.
Some doctors won’t hear you, and I wish I could spare you from this pain. Their arrogance will make you feel hopeless but know this: You will not lose hope. You will be heard. Doctors will eventually listen and see what burns beneath your skin. So keep speaking up about how terrible you feel. Keep insisting a 20-year-old should not feel like you do. You will not be undiagnosed forever.
You feel like you are the only young person suffering and sick. Let your loneliness move you toward others, even though it may come at great cost. Not everyone will receive you well, but many will. Learn to not be offended by the well-intentioned-but-hurtful things people say in response to your illness. Instead of being resentful, consider honoring your need to be known, seen, and supported as worth the work of helping others know how to relate to you. On the other side of awkward conversations will be the sweetest friendships of your life.
Pain makes the distance between your life and those of your peers feel far. But it’s not. As you share your pain with safe people in your life, they will learn to let their pain be seen, too. You’ll realize everyone hurts and your sorrow won’t be what keeps you from others, it will connect you to them.
Your life will be good. I can’t tell you how good or how hard, for that is yours to discover. But know there is good to come. You’ll be wildly surprised by the things you can and will do.
Your tenacity, assertiveness, and willingness to see your own pain in all its fierce darkness will make room for more goodness than you can imagine in both your life and the lives of so many others. I see you in all your fear and overwhelm, with dreams dangling and hope languishing, and you rise again and again. In both your weakness and your strength, you, my younger self, are beautiful. Thank you for never giving up.
With gratitude and respect,
Your older self