Being sick is lonely. And only the sick really knows what it’s like to be sick. Don’t get me wrong. Over the years, I have kept and made friends who have tried to understand and empathize with the struggles I go through everyday. And their support is absolutely invaluable to me. Period.
But unless you are chronically ill, it is hard to really understand what the minute-to-minute hardships are, how hard it is to find reasons to keep fighting, what it takes to “do life” daily, how much you want to work, why you are jealous of simple things like running, how devastating it is not to be able to care for your children, what it’s like to be disabled, how anxious one feels living with a time bomb body, how sad it is to be severely limited, why you can’t plan your day with an unreliable body, how one learns to live through pain, why it’s easier to have a “healthy person” persona, how hard it is to not have a single night of restorative sleep, what it feels like to know there is no relief, how it feels to know that you will be sick for as long as you are alive.
And what it’s like to long for a day of feeling well. Just one day.
So on especially difficult days, when I share these thoughts with in-person and online fellow spoonies, the “me too”s I hear makes me feel understood, validated and less lonely. And for this, I am grateful.