Strong Yet Weak – Rebekah’s Hidradenitis Suppurativa Patient Story

Sometimes I am just so tired of being strong each and every day. Our disease is hidden to all around us yet so very much at the forefront of our every thought. Every movement we make reminds us of our limitations and spikes our pain.

I’m tired.

Tired of not being able to just cry like a child because I can’t sit in a chair or reach for a pen without the stabbing pain reminding me that I don’t get to do those things without slow, intentional movements. Tired of the looks of “you still have that?” or “it can’t be that bad.” Tired of getting up each day and packaging myself in gauze and bandages and ointments just so I can go to the store.

The days pass as we try our best to keep our chins up and our flares down. We try Western medicine and Eastern medicine. We try everything we can get our hands on yet to no avail.

How do we go on?

Some days I don’t have the answer to that question. But here I am, reaching out again to find another glimmer of hope. Just a glimpse of hope that I can get my hands onto and hold tight for a while.

We need each other and we need those around us who are willing to put their arms around us and tell us we can make it until tomorrow. At least until tomorrow and we’ll deal with that day when it comes.

Today, we will work with this moment only. I need you in this moment to help me through today. Tomorrow I will ask again. And each day forward I will ask again and again because I will not stop needing you.

And you will not stop needing me too.

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