I can’t tell you enough how hard it is to have someone look at you and say, “You don’t look sick.” It becomes mentally exhausting to have people look at you and tell you that you’re “fine.” I can tell you no matter how you look at me, I am not fine.
When you live with a syndrome, you live with every symptom that comes with it. When I was diagnosed with postural orthostatic tachycardia syndrome, my life changed right before my eyes. I no longer lived a “normal” life, nor would I ever again.
On the outside I may look OK, but what you don’t see is that my body is in constant pain. When I stand up, you don’t see me getting lightheaded until it’s too late – followed by me being on the ground from a fainting spell. When you tell me that I’m OK, your telling me that my symptoms aren’t there. I can’t show you that I’m lightheaded until I faint. I can’t show you my chronic fatigue until I spend four days in bed.
When you tell me I look OK, it makes me feel like my illness isn’t real.
When you tell me to get out of bed, you’re making me feel like I have no reason to be tired.
I don’t get to have a normal job. I don’t get to shower everyday, just because some days I’m too tired to get out of bed. My life will never be a normal life. I’ll have to learn to live with that.
If you know someone with a chronic illness, don’t make them feel like their illness isn’t serious. It is.
Physical illness or mental, we have our bad days. We have days where leaving bed isn’t an option. Where something as little as taking a walk feels impossible.
For now I try to make the most out of every day. My life will get better, but only with help.
Listen before you speak. Sometimes your words are enough to make or break us.