What I Forget to Ask My Fiancé as He Sits With Me When I'm in Pain
When you come home from work to find me sitting on the couch, laptop on my lap, staring blankly at the TV, I know what you’re thinking, “She doesn’t feel well today.”
I stayed home again from the office, saving the slivers of energy my body affords me to do things that bring me joy. Picking up my wedding dress, going for a two-minute walk, having a conversation with you, my fiancé.
I can see it in your eyes – the exhaustion of caring for me, the frustration that it doesn’t seem to help and the desperation to “fix me”…and knowing there is no fix. I tell you all I need is for you to sit here and be with me, to let me cry or be in pain, and not be alone. So you do, and for me, it does help in that moment. But I always forget to ask, “Does it help you?”
What will help you in those moments where I find a moment of peace, but it breaks your heart that it’s just a moment? What will help you be OK with offering me a hug, not a miracle? What can I do for you to make you laugh, smile and feel sure that I do need you here, even if most of that time is spent talking through a bathroom door?
I’m the sick one, but I’m used to it. I’m used to the helpless feeling that no one else understands. I’m familiar with gritting my teeth through physical pain. I get that I’m a downer to be around, but I try my best to find joy in every day. I’m used to it all…but you aren’t. You didn’t ask for this when we went on our first date, or had our first kiss, or spent our first night together, or went on our first trip, or got engaged on my favorite bridge. You didn’t ask to watch the person you love struggle – and that is something I wish I could fix.
So here we are, two people wanting to fix an un-fixable situation. So let’s make a pact: When one of us dances, the other follows. When one of us grabs the other’s butt, we return the favor. When one of us gets the answer right in Jeopardy, we (try to) be happy for them. When one of us wants to walk to the stop sign and back, we hold hands and do it together. When one of us needs a minute, hour or day to themselves, we honor that and give each other space. And when one of us says I love you for the millionth time in an hour, we say it back every single time.
Because the thing you don’t know is, you are fixing me. Every time there’s another crack in my spirit, you always seem to find the tiny little piece that seems insignificant, but it fills the hole. It fills the leak I can’t even see. That must be the handyman in you, always seeing and feeling what truly needs to be done to maintain a strong foundation. You’re putting my spirit back together when I’m too tired to do it myself. A two-minute twirl into your arms in the middle of the kitchen, as we test out all 37 first dance song candidates, is what’s fixing me. You can’t cure this disease, but you can help me live a life where I’m not constantly waiting for one.
So to the person who loves me and thinks he can’t fix my flare, I want you to know I’m doing OK, and I hope you are too.
Love, the patient
Getty Image by AntonioGuillem
I was diagnosed with ulcerative colitis when I was 14 years old. Since then I’ve had two major flareups but have spent the majority of my time in remission. In July 2020, I made the great-for-me choice of going on anti-depressants, which has changed my life. My passion in life is to remove all stigmas around invisible illnesses and to empower patients to advocate for themselves and not live in any sort of victim mentality regarding their bodies and illnesses. They are part of who you are, not all of who you are. In my free time I enjoy spending time with my husband and friends, swimming, working out, reading and exploring new coffee shops. I’m also the new group leader for the Crohn’s and Colitis Support group here! I'm exploring that sober life too, one day at a time. 7/5/2020
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