Dating with Chronic Illness(es) Pt. II: “Let’s Talk About Spoons, Baby”

It has been so wonderful talking with you all about dating with chronic illnesses. I send my deepest appreciation for the ways you have exhibited community, solidarity, and reflection!

In my last post, I promised a follow up and I was able to chat with Jene again and a few other good friends about this topic. Please read this information responsibly, knowing that this post does not speak for an entire community. Let’s get into it!

“Being well can get expensive” – Jene A. Colvin (JAC)

There can be significant costs associated with the treatment of chronic illnesses. Visiting Dr.’s and specialists costs money. Getting tests done requires money. Insurance deductibles… money. Medicine… money. Vitamins and supplements… money. Appointments for therapy… money. ER visits… money.

Chronic Illness Cat 2

Photo Credit: Chronic Illness Cat

You’re probably sensing a theme.

“Budgeting for your illness when you share finances or just respecting your partner’s health budget is important when dating with a chronic illness. We might not be able to go out on the town… because I just got my doctor bill” (JAC)

So, it’s important to ask good questions about what a date might entail. Discussing the financial and physical commitments to the time clears up expectations.

Re-imagining Dates and Netflix & Chill

One of the most swoon-worthy moments I’ve experienced is when a partner looked deeply into my eyes and said, “Is today a Netflix & chill kind of day?” Originally, we’d planned to go sightseeing downtown. My body had other plans.

I tried to ignore it for the better part of the morning. I wanted to follow through with these plans. I knew they were genuinely interested in the sights we planned to see.

There are days that I can lovingly encourage my body to come along with me. I give it tea and medicine. I give it warm baths and light stretching. I give it orthotics, a meditation practice, and bland foods for digestive upset, as needed. Yet, there are some days where none of this will work. I needed a way to spend time with my partner, while being attentive to my body’s limits. So, Netflix & chill it was.

My good friend Athena (1) talked to me about her experience with this, and I paraphrase it here with her permission:

I’ve had dates set and then would suddenly have to change them (due to illness). I got the feeling that I seemed like a flake, because I didn’t feel comfortable disclosing my illness. Many people would lose interest because it would take me so long to get back to “normal”. It can even make friendships hard, because I have to make plans with a contingency. “If I get a nap before… maybe I can go out” or “Let me rest a day before and we’ll see”. Or I just become an entire recluse – sick and shut in list.com. Scheduling almost makes me itch because I’m so organized. I like things to work. I get really frustrated with myself because people expect me to be the one who has to change

Dating (or even maintaining friendships) with chronic illness(es) means being flexible. In my own experience, most of my physical energy goes to my professional life and supporting myself in that area. After that, I’m looking at my wellness goals. Somewhere in between (not before or after), I’m thinking of ways to consistently show up for those relationships and partnerships that are important to me.

In my life, I’ve seen that it can be done. But sometimes, well planned dates require a change of plans. Sometimes, my body needs my throw blanket, hot tea, Netflix, and legit… chill. It’s important to remember that honoring the limitations of others is a hallmark of romance. #bodyroll #ifmybackisuptoit 😉

Paperwork, Pills, & Emergency Processes

I don’t particularly love talking about this part (sigh) but it is important to ensure that there are emergency and contingency plans. In the case of an emergency, you’ll want to know if your partner equipped with information about medical needs, allergies to medicine, signs of an illness flare-up, emergency contact information (if it’s not them) etc. to come through in the clutch. Let me be clear, whatever you disclose or expound on with your partner is. YOUR. business. I know how sensitive these things can be. I simply want to call into the e-space that a plan for paperwork, pills, and emergency processes is helpful and oftentimes, essential. Because “shit gets real when everyone else is asleep and ya’ll are at the ER” (JAC).

Doing Your Research, Suspending Assumptions, & Curating Language

Yesterday, Jene talked about using a light / color system to communicate about chronic illness. I resonate deeply with some of language around the Spoon Theory, originally created by Christine Miserando (read it here) (2). It’s not perfect, so I pair this with Johanna Hedva’s Sick Woman Theory. In my life, it’s important for baes and potential baes to have this kind language – to know that through my daily activity, I’m negotiating energy through the lens of whatever physical limitations I have aka “spoons”.
Yes… last week, I was twirling with you to vintage Prince cuts.
Yes… the other day, I waited with you in line to get to that new brunch spot.
But it helps if you know that I’m negotiating with my body to do these things. I’m enjoying myself but I might also be looking for a seated area. I’ve bought along an assistive walking device. I have my orthotics on inside of my get-em-gurl shoes. I’m stopping to stretch and to rest. I’ve saved my “spoons” – I’ve cut out another activity so that I could be present in this activity. I parked close to the venue, because I may not be able to walk back without significant pain. Or I could have to cut out an activity (or multiple activities) to recoup from being present in this activity. Again, I’m negotiating “spoons”.

So when I say, “I have about 4 spoons left”, I need bae to have done the research & have a reference point for that. ‘Cause bae can’t be out here saying, “But, if you did [fill in the blank] yesterday, why can’t you do it today?!” (Answer: I had a different amount of spoons).

Ending Notes & Points of Dialogue:
1) Athena is the pseudonym I chose for my friend. She said “Make it a spicy one so I can chuckle”. I told her I didn’t know if I could do spicy, but I figured the name of a goddess might suffice.

2) For those who are unfamiliar with this language, please do take the time to read Christine Miserando’s Spoon Theory. It does not reflect an intersectional approach to chronic illness (imagine I said that twice, for emphasis). So, read through it, take what works, and leave the rest.

For a more intersectional approach, I suggest following Spoon Theory up with Johanna Hedva’s Sick Woman Theory. There are a great deal of resources (limiting it to two here for word count) and if you find any that you want to share with me, as well, leave them in the comments below.

What language do you use to talk about chronic illness with bae or potential bae? Do you use a light / color system? Spoons? Something else? Feel free to let me know in the comments and / or through the contact form! I’ve enjoyed hearing from you all.

Perhaps, we can also talk about baes & holidays (because – whew!), sex & sexuality, and more. If you want to get in touch with me about these things, contact me here!

Image Credit: Createherstock.com