I know I cause extra for others. I know I am high maintenance due to my condition. But please do not call me the sick girl.

An Open Letter to the Usher at the Theater Who Asked Me If “I Was the Sick Girl”

I know I cause extra for others. I know I am high maintenance due to my condition. But please do not call me the sick girl.

Dear Miss,

First of all, thanks for being an usher tonight.  I’ve always had an admiration for what you do and for the whole world of the Great White Way.  Tonight, I was really excited to see one of my favorite musicals being revived on Broadway.  I used to live for this stuff, and after being estranged from the theater scene for a while, I still do love it. However, it’s been hard to get back to that world after a few “medical detours.”  Physically and emotionally.

I came to the theater with an equal mix of nerves and dread. In my old life, I would have just hustled right to my seat, 20 minutes before show time, devouring every last page of my Playbill, maybe running down to the orchestra to see if I could sneak a look at the musicians, and eagerly hurried back to my seat with elated anticipation as the first booming sounds of the orchestra flooded the building with astounding resonance.

But tonight, like every night I go to see theater now, I felt like I was intruding on a world I didn’t feel quite as at home in.  I tentatively walked towards the ticket stand, with equal parts adrenaline and anxiety, as I anticipated explaining my unique medical situation to the house manager, taking in their stupefied look, and keeping my composure as I tried to answer their baffled questions as calmly as I could.

I get it, though—I would be confused, too.  It sounds weird that because of all of my surgeries, I can’t sit down. I have two bags on my body—an ostomy bag taped to my side and a large bag in the middle of my stomach where my bellybutton should be, over an open wound that hasn’t healed for five years.  It makes life a bit more effort, but it’s worth it, because I love living.  

But the bags prevent me from sitting comfortably.

I don’t mind if I don’t have a great view – I can just stay in the back where I won’t disturb anyone for the many times I’ll be in and out of the bathroom throughout the show.  No, I don’t get tired standing, and yes, I’m used to it, and double yes, I know it’s weird.  It’s not a preference, it’s a necessity.  And I know it feels ridiculous that I can’t wait until the end of a song to use a bathroom—I hate it, too, and I certainly don’t want to be a distraction.

And the food—I get it.  Nine bottled drinks in my backpack may seem excessive for a two-hour show.  As do the six blocks of cheese stuffed in the side-pockets.  But no, I can’t wait until the end of the show. I only absorb 20% of what I eat so it means I have to always be eating something.  And because I malabsorb so much, it means for that 80% leftover, I’ll need the bathroom—a lot.  I don’t have a stomach and it takes a lot of work and constant calories to keep up my weight—which I’m still trying to gain more of.

I know I’m asking you for a lot of favors, and then you have to get a manager of the house to approve, or a supervisor, and I really feel bad that you have to do all that for me, in addition to the hundreds of people that are still waiting to be seated, staring at this skinny little girl trying to manage a backpack twice her size. So tonight, after a bit more confusion than usual, I went downstairs to the general ladies’ bathroom and just hung out there while the show started.  I felt like I was causing more commotion than I wanted.  So I just waited there, trying to hear what was going on in the show through the speakers.

I’m not upset about how hard it was for that usher to make these accommodations.

There is only one thing that made me upset. It’s how I met you.  You asked me a question when trying to work things out, which I really do appreciate.  You came down, saw me in the bathroom, and before even introducing yourself, said, “Are you the sick girl?”

I hate that word. I really do. I immediately snapped back (and I’m sorry if that came across the wrong way, but it struck a nerve). “No, I’m not the sick girl. I have medical circumstances.”

You didn’t seem to be bothered by the difference in phrasing and went on with your well-intentioned attempt to make my necessary accommodations.  Eventually, it worked out, and thank you for helping me find a nice place to stand in the back and eat my cheese while enjoying the show.

But I really hope you heard me when I said, “I’m not the sick girl.”

You can call me whatever you want – weird, high-maintenance, difficult – although I really do appreciate all of the accommodations you are willing to make.

But please, do not call me sick.  I have medical circumstances.  Circumstances that I cope with through the power of theater. Circumstances that I won’t let determine the course of my life.

So the next time you meet someone that needs special accommodations, please, don’t call them the “sick girl.”  Hundreds of people mill in and out of a theater every day. What if we judged all of them with the first label that comes to our minds?  What if we judged all the actors on stage with the costume they wore?

Theater’s about opening up our preconceived notions.  I hope I was able to do that for you. Even though all I said was, “I’m not the sick girl.”  Maybe one day, you’ll see my show and meet the person behind the patient.

And I really did enjoy the show, by the way. So thank you.  I had a great view.

Wishing you the best,


This post was originally published on https://amyoes.com/

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