Living with a chronic disease in remission is like living with a ghost always looking over your shoulder. You know you shouldn’t let your guard down, that the always present being could strike at any time and render you a shell of a body once again- but you do anyway, because if you don’t let your guard down, what do you have left?
You take your time and put all of your effort into building an incredible life for yourself, one which you always hoped to live. But the everyday reality of knowing that it could all be washed away at any moment is overwhelming, daunting. You find love, but you also live with the worry of how a relapse would affect relationship, if they would stand by you or run away when you most need them. You try your hardest to be cautious, but you know there’s a thin line between being cautious and letting your disease rule the choices that you make for yourself and how you live the remainder of your life. If you do too much you fear you are simply being reckless, and if you don’t do enough you fear you are only making excuses. There is no happy medium.
Sometimes you go days without remembering the terrible feelings that you felt when you first got sick- the pain, the shock, the anger and sadness that overwhelmed you when you realized you’d spend the rest of your life fighting against something you have no control over. Sometimes, there’s a phantom- a stabbing pain in your lower back, a whirlwind of dizziness in your head- that reminds you all too well of the cruel reality that you’re facing.
Sometimes all you have is optimism, a hope for better. And most of the time, that is enough. Nevertheless, the fear lingers along with reminders that one day it will be back, and there’s nothing you can do to stop it.