Some days, nothing is what my body needs me to do. Other days, nothing is all my body can do.

Yesterday I woke up early for physical therapy, then I cleaned the house, ran errands and made dinner.

Today I could barely get out of bed. The fatigue from yesterday’s excursions combined with today’s symptom flares and the subsequent extra medication required have knocked me off of my feet.

I live with two rare diseases, and I’m still struggling to understand the complexity of what’s going on and how to manage everything. So are my doctors.

But that doesn’t stop people from asking, why can’t she work a full-time job? Why does she say no to activities so often?

Last Friday I went to see KISS live in concert.

With menacing gut symptoms, I spent the first hour of the night visiting the bathroom, pacing the arena’s corridors, praying I wouldn’t throw up and managing the anxiety of what to do if I actually became sick enough that I did. Mast cell issues, be damned — I didn’t lose my cookies.

It was a great show and I felt rotten. I forced myself to go because, despite my gut, I actually felt better that day than I do on many others.

But people will see my smiling face in pictures on social media and think, hey — there’s nothing wrong with her. Only those I went with — my husband and our friends — and my mom and therapist know how tough that night was on me.

I’ve been living with chronic illness my entire adult life, and now that I’m in my mid-30s and my conditions continue to worsen, I’ve hit the point where I’m tired of apologizing for what I do and don’t do. What I can and can’t to. What people think my life should look like compared to what it actually does. I’m done, and I’m not sorry.

Why should I be?

It’s taken me a long time to reach the point of even asking that question, and to be honest, I’m not all the way there yet. I’m practicing a fake-it-‘til-I make-it approach, and have to keep reminding myself that what others think of what I do doesn’t matter, because they don’t know what it feels like to live inside of this body.

It’s hard because I know I’ve not fully accepted what my life looks like when I measure it against what I want it to look like, or thought it would look like, or always hoped and dreamed it would look like. But, I think setting aside other people’s expectations is a great place for me to start.

Tomorrow I’ll base what I do on how I feel and I won’t force myself into unsafe or uncomfortable situations because other people think I should be there. I’ll respect my needs and I won’t feel guilty for listening to my body. It has a lot to say.

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