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Down the rabbit hole.

Down the rabbit hole.

For the past few days, my Crohn’s symptoms have been flaring.

It all started with some pretty intense abdominal pain. It kept me up most of the night, which is how I know it’ll be a bad day in the morning. 3 AM cable news is never a good omen.

The pain gets worse when you eat, but when you don’t eat, you’re nauseous, and a little dizzy. So you try to eat what’s least likely to hurt you. It hurts anyway, at least for a few hours.

You practically glue your heavy duty heating pad to your stomach when you get home from work, developing a leopard-print burn rash on your stomach that most people don’t know exists. But you know, because you’ve been here before.

When a friend asks you how long you usually have to wait this type of thing out, you falter. Because usually, it lasts a few days. But once, it consumed an entire year of your life.

And every time you’re bowled over by abdominal pain so bad it knocks the wind out of you, all of a sudden, your mind is back there again. Back living in the year you barely left your bed, when you often fell asleep with daylight still streaming through your mini-blinds. The year where you only ate white bread and plain fish. The year that steroids made your bones fragile and your hair fall out in clumps.

That’s the thing that’s hard to explain to people about living with a chronic illness. The trauma of how bad it can get follows you. Of how bad it once was. That’s why even the best intentioned advice to “stay positive!” can fall on deaf ears –– when you’ve been through what many chronically ill folks have been through, it’s an uphill battle fighting your conditioned, post-traumatic stress response.

So when I start a new biologic med, I have to cut myself slack for having a panic attack in my apartment before leaving for the doctor. Because I’ve had a reaction to a biologic before –– one where I quite nearly stopped breathing –– and the memory of that stays with me. Our experiences shape us, for better or for worse.

So when a friend asks how long this little flare might last, I forcefully turn my brain to the logical answer –– probably just a few days. But a nagging voice in the back of my head brings me back to the time, a few years back, when I thought this would only last “a few days,” before it ultimately turned my reality upside down –– and reshaped who I am as a person.

And all we have, fighting those memories, is hope that things will be better this time around. And the comfort in knowing that it’s okay to be angry, and sad, and all manner of negative emotions –– because struggling to cope with the reality of your body constantly failing you is okay, and you deserve the time and space to work through that trauma. So you go about your life, wince over your keyboard, and breathe through the pain. Most of the time, that works. When it doesn’t? You write this.

Your Story is Yours Alone.

Your Story is Yours Alone.