This Is What They Don’t Tell You About Chronic Illness

Idiopathic sounds like such a smart word but it has the stupidest meaning. Idiopathic is an idiot…it means we don’t know why it happens.

A chronic illness that we can’t figure out the cause for is not nice. It is not helpful. It is scary.

I’ve been in and out of the hospital since the year started. ITP. Again. Third time in my life. My body is killing off platelets so I have nothing saving me from bleeding out. When I was 5 and when I was 11, I did not really know what was going on. I was a child. Pediatrics was so much simpler.

Now I am 23 and I’m battling this disorder again. This time I can read my parents emotions better. I can better understand facial expressions and changes in the tones of everyone’s voices. I am a one in a million young woman who gets diagnosed with ITP every year. One in a million…doesn’t seem too great now.

I’m scared.

I’m so scared.

I feel like I’ve been strong for so long. For my family and for my friends and for myself. But it gets harder and harder as the days go by and good news becomes less frequent.

They don’t tell you how lonely it gets in the hospital room. They don’t tell you about the twinge of nausea you get every time someone knocks on your door. They don’t tell you how sharp the pain in your ears become because of the blaring of the beeping of all of the machines around you. I’m in the middle of a halo of electrical apparatuses. They don’t warn you about how frustrating it is to be unable to get out of bed to grab some socks. They don’t tell you how careful you have to be with not hurting yourself, even just lightly tapping your arm can cause the skin to bruise up.

They don’t tell you how familiar you become with words like subconjunctivital
hemorrhage and purpura and fatal and thrombocytopenia. They don’t warn you about how easily you can talk about your disorder without realizing how scary it actually is. They don’t tell you how much of an expert you become at knowing anything and everything about your illness. Forget Wikipedia, just ask Sara.

They don’t tell you about the pain that comes from every flush of saline, potassium, Zofran, Demerol, solumedrol that is pumped through your IV. They don’t warn you about the fire that burns through the plastic tube that scorches through your veins up your arms through your skin. They don’t tell you that you can feel it moving up your arm literally every millimeter. They don’t warn you about the fire burning inside…a fire that you can’t really put out.


They don’t tell you how much blood they need from you every few hours. They don’t tell you how accustomed to it you will become. They don’t tell you how you feel a weird sense of superiority every time you watch that needle break your skin. My eyes cannot break contact with the needles. I have to watch it pierce my skin. It makes me feel stronger.

They don’t tell you that strength is fleeting. They don’t warn you about how lonely it gets. They don’t tell you how badly you will want someone, anyone to just hold your hand while you’re being poked and prodded. They don’t warn you about the random outbursts of crying, no, sobbing, that occurs. They don’t tell you how desperate you will feel to want someone to wipe the tears off of your face. They don’t tell you how difficult it will be to put your hand up to your face to push your glasses back up. They didn’t warn me about how much it would hurt to bend my arms.

They don’t warn you about the boulder that falls on your chest every time they say chemo and alopecia. They never warn you about the heavy feeling in the pit of your stomach you will get when you’re sitting in your hospital bed by yourself trying to figure out how the hell you ended up here. They don’t tell you it’s not your fault. They don’t tell you not to kill yourself over what is already killing you.

They don’t tell you how much of a fighter you will become. They don’t tell you how much of a warrior you are. You do that on your own. You become your biggest cheerleader and hero. They don’t tell you that in the face of every hit you take and every punch to the gut, your skin grows thicker and your mind becomes stronger. Your faith is reaffirmed and your strength is intensified.

Because you are stronger than the needles and the drugs and the autoimmune deficiencies going on inside of you. You are tougher than the fire that burns through your skin. It does not make you weak. It does not make you feeble. No, my love, it makes you a fighter. You are a combater in the face of everything the world on the outside and your world on your inside throws out at you.

Be gentle with yourself. Take care of yourself. You are a trooper. And you will get through this.

Idiopathic is an idiot. You are bigger than all of it. You are fiercer and grander than this. Your illness does NOT define you. You define your illness. And that is something nobody can tell you except yourself. TC mark

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