Love. Relationships. Marriage. Like, seriously, how many spoons do people think we have to deal with all THAT?
For real though, these things aren’t easy for anybody. They take work. Commitment. Time. Respect. And that’s just the “in health” part. Throw in some “in sickness” and you’ve entered another realm. Throw in some chronic “in sickness” and you (and your partner) might feel like you need an entirely new map to navigate through. My relationship is no different.
The truth is, I’m not here to give advice. I’m not a marriage or relationship counselor. I don’t even know if I’m doing it “right” or not! I am here to tell you though, that I feel you. I see you. I have the condo, the marriage to the perfect guy, the amazing miracle child and a well-established job. American Dream, right? I guess so, until you realize I have a 50-spoon life being run on 20. So what suffers? Me. And everything else.
What? Did you think I was about to blow some sunshine up your ass? Relationships are HARD. Relationships with Chronic Illness are REALLY FUCKING HARD. And that’s just from the spoonie’s perspective. Can you imagine falling in love with someone knowing you’ll undoubtedly also be their caregiver/physical/emotional support system ALL THE TIME? I give major props to my husband, because there is a lot more “in sickness” in our marriage than “in health”.
So what makes it work? Exactly that. Work. Every person and therefore every relationship is different, but I have found that being straight-up from the get-go has kept me from wasting time and getting hopes up on a person who is too afraid of the illness to see what a bomb-ass prize they’re passing up. I found an amazing human who didn’t falter when I blurted out in our first phone conversation (before even meeting in person) that I was very sick, that my mother was very sick (she had just received a terminal diagnosis the day before I met my now-husband) and burst into tears….lord that was one hell of an introductory phone call! But I was real, and he respected that.
We fight. A lot. Everything from the temperature we keep our home (he is always hot and I am always dealing with Reynauds – I win!) to frustration over my illnesses, my ability to do one thing and the next minute no longer able to (for the record, it’s usually me getting frustrated and angry and taking it out on him unfortunately), typical relationship irritations, etc.
But we also love. Deeply. He holds my hand while they cart me down dank hallways to MRI rooms. He wipes his and my tears when I’m going through new things or getting ready for experiences I haven’t had yet. He tells me he scared for me, and doesn’t judge me for being scared. He still wants to bang me, even when my prednisone “moon face” is POPPIN’.
And I know that he will fight and advocate for me and our family, share his spoons by pulling more weight, and love me, regardless of where our relationship leads.
*Wedding photos by Alicia Buttchen Photography