To the Boyfriend Who Jumped Into My New Chronic Illness Reality #rwanda #RwOT Jets

Dear boyfriend,

I’m scared.

Scared that because we’re so new to each other, you’ll get scared away from what is also my new reality: chronic illness.

Before I met you, chronic illness lingered in my body, waking occasionally, leaving me feeling sick at times. Once we connected, it plotted and schemed even as you started to woo me, win me over with all the things I’ve come to love about you: your humor, your witty remarks, perfectly timed sarcasm, your smile, your passion for life. While we got to know each other better, chronic illness started to get to know me better. It wouldn’t stop interrupting our time together, apparently also craving the spotlight.

Like when a 24-hour migraine hit mid-date, sending you stepping in and keeping me from passing out as an aura played out. Or, the time my asthma had me ending a phone call where we whispered sweet nothings to each other abruptly. Then those wonderful moments after making love, when the fatigue was beyond a loving afterglow and more about the fact I can easily be overexerted too often. And recently, I tried to weep silently on my end of the cellphone I gripped in my hand as (suspected) fibromyalgia had my entire body aching and burning. You quickly Googled ideas to help, telling me to pull myself up and out of bed and into a hot bath. It helped.

I hate telling you I’m in pain. That another migraine is just on the horizon. That my body aches because it’s hurting and not because I ache, wanting you. I hate at times I can feel my health decline and it’s not authentic to the simple, but energetic girl you first saw me as. That the darkness creeps in much more often when I physically feel at my worst and depression tries to rear its ugly head.

I still remember the moment we almost broke up, that moment I chose to share about my health pre-diagnosis. It was I who insisted I didn’t want my future to be your future, that I wanted you to find happiness with a much healthier woman. I wanted you to embrace being young; not be slowed down with a girlfriend whose body would sometimes feel so, so old.

But then, it was your turn to talk, to hold me, to kiss me, to try and make me see what you said was in your heart… which you shared was me. I’m so glad I found the strength to run to you, to accept your offer of a companion on this sometimes difficult journey. That I chose to be selfish for once in my life.

The moment you held me in your lap, caressing my back as my cries shook my body — a body that ached and throbbed due to a likely fibromyalgia flare — after I got my first possible diagnosis, was a heartbreaking moment for me. You promised you weren’t going anywhere, even as I sobbed, saying I didn’t want this illness and I hated my body. But then you pushed play on our movie and we cuddled on the futon in the basement. It’s moments like those that make me realize I’m far more than my sickness, more than the suspected central sensitization syndrome (CSS)/fibromyalgia I have. More than a body that doesn’t always match up to the free spirit inside of me.A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

Boyfriend, we’re still new to each other, new to this reality and new to finding out how to maneuver day by day in our relationship with it. And regardless of if we make it months or years together, I’ll never have the words to express what our time together thus far has done to help me, to heal my broken heart even as my body may continue to break. I love you more for your gentleness, your willingness to understand and your patience. Thank you for your love and thank you for your strength. Thank you for dating me and not just my chronic illness.


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