Love & Illness: Conversations with Spoonies and Their Partners

by Ariela Paulsen
Love & Illness: Conversations with Spoonies and Their Partners

This Valentine’s Day, we want to celebrate love, and recognize the role that illness can play in romantic relationships.  When illness impacts your life, it inevitably ends up impacting your partner’s as well. Partners have to navigate the tricky boundaries between lover, friend, and caretaker.

It takes a lot of work and crystal-clear communication to create equal, supportive, loving relationships. But when it works, love with spoonies can be incredibly strong.  Vulnerability, communication skills, and empathy are all deepened by the experience of chronic illness, and this can bring relationships such depth!  

We asked some of our Friends in the Fight to share their own stories of love and illness:

Tiffany and Caleb


What is a challenging thing about being in a relationship shaped by illness?

One of the most challenging things is finding the best way to communicate as a patient and caretaker without tarnishing the romance of the relationship. For instance, reminding your partner to take their medications and do their treatments can feel like a demand from a parent which then can trigger resistance and cause frustration for both parties. Learning about how one another best receives support is key! The financial burden that inevitably comes with a chronic illness is also something that can cause tension in the home — nothing to the fault of the patient. It just forces most to be a little more strict and resourceful when it comes to making ends meet.

What is one surprising thing that has brought moments of love and intimacy?

Being in the hospital actually brings us closer, as weird as that sounds. It shifts things into perspective and a lot of worries, doubts, and insecurities are thrown out the door because we are forced to live in the present and honor each moment with a deeper sense of gratitude. It gives us time to reflect and really share the rawness of our love. It is a different type of intimacy — a mental and spiritual closeness.

What is a funny thing?

The level of privacy in our lives is pretty slim to none — however, we choose that for our own selves. We love to share moments of our lives openly and vulnerably on social media. We appreciate the support and responses from our community but what we get most jazzed about is the ability to create a space for others to not feel alone. It’s pretty funny that some of the strongest friendships are formed because of the topics like shapes and size of poop, the process of sperm analysis for IVF, and color/consistency of mucus.

Ari and Dan

What is a challenging thing about being in a relationship shaped by illness? 

We struggle to balance saving spoons while honoring the fun things that we want to do together.  I always want Dan to feel valued equally, so I’ll push myself to go do things he’s excited about, and end up paying for it.  It has also been a challenge that I have such a limited diet. Dan’s first love has always been food, and he feels sad every time he can’t share it with me.

What is a surprising thing about it that has brought moments of love and intimacy? 

Dan says, “Being sick for so long makes you better at being sympathetic to other people’s needs.”  In general, we were forced to have a very open relationship from early on, because I had just begun a new round of testing and tracking and trying to figure out what was wrong with me.  I also find that, after a really bad episode, if he was able to be there and support me, it brings an intense closeness. (Dan says “no, I don’t really feel intimacy after you’ve blown your guts out in the bathroom!”)  We both value rest, so since the very beginning of our relationship, we’ve spent a wonderful amount of time just cuddling together, listening to music. It feels so loving and intimate, without needing words or even eye contact.

What’s a funny thing? 

Dan’s immediate response: “The bumblin’!  You just bumble around any time I’m in the house!  I’ll be in the other room and just hear ‘Ouch! Crap!  Oof!’” We really do find SO MUCH to laugh about in illness!  Before I had a good handle on things, I would get extreme fatigue and have to lay down immediately, and not be able to get back up.  Dan would come home to find me flopped on the floor, face first into a chair, etc. He’d remark, “Oops! You’ve flopped again!” and then laugh and take a picture.  He also loves writing down the silly things I say when deep in brain fog or exhaustion so that he can read them off to me later and laugh about it. We actually made a calendar this year that included pictures of me flopped in various places, with his collection of silly quotes!

Allie and Calvin

What is a challenging thing about being in a relationship shaped by illness?

When Calvin and I first started dating, I was in the midst of rigorous treatment and was experiencing some of the most debilitating symptoms of my life. The way I was able to contribute to our relationship then looks very different than the way I am able to contribute now. We’ve had to learn to gracefully adjust expectations of each other and also to openly communicate about our needs and abilities, which are changing all the time! 

What is a surprising thing about it that has brought moments of love and intimacy? 

Actively building in time for rest is a really important part of my daily routine. No matter what physical or mental place I’m in, when I can share some of that rest time with Calvin I feel so fortunate to have a quiet moment, just us, to share. I think if rest wasn’t such a vital part of my routine, that quiet time might be harder to find. 

What’s a funny thing?

I still deal with pretty bad brain fog and I lose things all the time. We’ve had some great adventures as a result of my forgetting important things in strange places, and I love that we’re able to laugh about it in the moment every time.

Stay tuned for the story of our founders, Emily and Yousef!

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