To the People Who Call Those With Chronic Illness ‘Brave'
To the people who call those of us with chronic illnesses “brave”:
Please stop, and please hear me out. As most of my Facebook friends know, I have idiopathic intracranial hypertension, a rare brain disorder that causes me to produce too much spinal fluid. It’s a lot more devastating than it sounds. It has required six brain surgeries so far, and they aren’t done yet. I also, like most of you, had never heard of this disorder before (until I was finally diagnosed). I have been called “brave,” “courageous,” “an inspiration” etc., by everyone I interact with at some point I’m sure. I’m not brave. Far from it, actually.
All you see is the brave face I put on in the morning. You see me laugh and joke. You hear me talk about brain surgery like it’s nothing. You see me smiling 12 mere hours after they have cut my head open, and thus, I get pegged as this brave, courageous soul. As flattering as it may be, let me tell you about all the things you don’t see.
You don’t see me curled up in the fetal position, bawling, when I don’t think I can handle one more minute of the daily pain I’m in. You don’t see me lash out at my husband and loved ones when I don’t feel good. You don’t see how viciously angry I become when a doctor doesn’t listen or take me seriously, all because he’s never seen anyone with this disorder before. You don’t see my husband having to bathe me because I don’t have the energy to do it myself. You don’t hear me beg, plead and bargain with God. Just hoping He will show mercy and call me home. You don’t hear me tell my husband that he should just leave because this life is not fair to him, and he doesn’t have to stick around to be a part of it. (You don’t hear him telling me to stop when I say that either, but that’s beside the point.)
What you see is what I want you to see. You see a facade. You see only the best I have to offer, because I’m afraid of what you might say if you saw what was beyond that. Friends, I am not brave. I am terrified. I’m afraid of the rest of my life being full of physical pain. I am simply existing the best way I know how. It’s survival. Because what is my alternative? While I don’t fear death, I want to experience life a little (a lot) longer.
So please stop calling me brave. If this is what bravery is, I don’t want it anyway. I don’t want to be an inspiration if this is what that means. I want nothing more than to be rid of this disease and never think about it again. Until the day comes where they find a cure (which I doubt will come in my lifetime since we can’t even get funding for research), I am surviving the best way I know how. Whatever it looks like from the outside, now you have a small glimpse into what it’s like on the “inside.”
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.