The headline of this article might seem a little dramatic, but the thing is, it's true. I don't even know how sick I am yet, because I'm stuck waiting for months before big appointments get here and we're able to run tests for the rest of the conditions we're suspicious of.
In the midst of everything, it has gotten too overwhelming to share over and over again, so my mom and I recently started a Caring Bridge page, so we only have to share things once. I logged on today and read through some sweet, sweet responses from people - some of whom I haven't seen or talked to in so long. One particular response stuck out to me: "Oh my word, I had no idea it was this bad." In the midst of someone's encouragement was a sentence that made me stop and think even more about what I had already been feeling.
No one really does know how bad it is.
I feel like those with chronic illnesses are caught in a horrible tension between wanting to share what they're going through and being scared others don't want to hear it. Constant questions fly through our heads: What if they don't believe me? What if they think I'm complaining? How do I prove my pain? And constant opinions from others follow us: But you don't look sick. It could be worse. Are you sure it's not all in your head?
The truth is, my illness still takes me by surprise, too. I get another diagnosis, and it's a weird confirmation that I am actually sick, that I don't have to worry that I'm faking it even though I know I'm not. I have a horrible flare, and it shocks me that my pain can get worse than it already was. New symptoms arise, and with them come more panic and fear.
But no one sees any of that. I get another diagnosis, and I just spout it off to people. I'm having a bad day, and I smile anyway. My pain is debilitating, and I sit in silence. And I know I'm not the only one. It's too much to explain. It's too much to understand. No one wants to hear it. Or do they?
We have invisible illnesses. We are silent sufferers. But maybe it's time to speak up a little bit. Maybe it's okay to say, "yes, it is this bad" and stop feeling the need to sugarcoat every thing about what we're going through. Maybe what others call "dramatic" is actually necessary, and maybe there are more people than we think who want to know the truth, no matter how messy it is.