dating with chronic illness

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

Dating with Chronic Illness(es): Healing Conversations with Sister-Friends

The constant, chronic pain hummed at a 3 in the electric wiring of my body. Through each city block, my body spoke to me, “Okay, slow down”. First, an uncomfortable warmth in my feet, hips, and lower back. Then, a distinguishable ache. Finally, sharp pain. We got to the bakery just in time for me to sit and re-group.

Our double date was wonderful in every respect – good food, great friends, in a city that we love. Yet, when we sat down with our pastries and coffee, our conversation pivoted quite a bit from those things.

“Yo, I’m not sure many people understand what it’s like to date with a chronic illness that isn’t visible”

This conversation was called into the space by my sister-friend, Jené  Colvin (whose awesomeness really does surpass words). It was the conversation that engaged us until the bakery closed for the night. It was a time to vent, to acknowledge this reality, and on some soul-level, to continue healing. Our partners sat in (mostly) quiet reflection, open body language, and a few knowing nods along the way.

This was the start of a brainstorming process for the things we’ve learned about dating with chronic illness(es) along the way. We want to share those things with you.

It’s important for you to know that we present our knowledge and lived experience to you with both anticipation and trepidation. For me, it is the continuation of a project I started (got scared of, and then stopped) a year ago. Typically, we both tend to be extremely reserved about the life cycle of our romantic relationships. Yet, through our conversation, we’ve realized that this is the moment to open up about this.

As a note, for the sake of “not all our business needs to be out on these Internet streets”, I will not directly name the chronic illnesses involved – unless it serves a key point. Jené’s comments will be marked with JAC, and my comments will be indicated by JTP. It is my great hope that this information is helpful for you as you reflect, adjust, engage, (and – lowkey / highkey – dismantle ableism).

Disclosing Chronic Illnesses

JTP: I’ve had some very interesting first date scenarios when it comes to disclosing an illness. Let me say from the gate, I still haven’t found a rigid, catch-all rubric for disclosing a chronic illness in a romantic setting. For example, the first time I met up with V in person, I knew that I would have to disclose some potentially uncomfortable things. I honestly didn’t know how that would sound:

“Yes, I’d love to go out to eat with you! But because of a chronic illness that impacts my digestive system, we just might end up going home a little earlier than anticipated if my body decides it just isn’t having it”.

“A walk around the park sounds lovely! Also, I’ve got chronic plantar fasciitis in both feet and this impacts my overall gait. So, if I stop in the middle of a ‘moment’ to stretch, then that’s why…”

“I promise I’m so excited to be with you right now! Yes… that’s exactly why I’m breaking out all over. My body has an interesting way of processing adrenaline…”

Sometimes, my body decides to be incredibly kind and sweet. Other times? Well…

chronic-illness-cat

Photo credit: Chronic Illness Cat, Facebook page

With V, I ended up disclosing very early on in the process because of the circumstances. In other situations, I waited a bit longer. There have been times I’ve disclosed and ‘potential bae’s’ have looked at me in shock, surprise, and even… fear. (Needless to say, they didn’t last very long). There have also been times I’ve disclosed, expecting fear, and have been met with deep understanding.

It takes a lot to disclose because of the stigmas we have around health. In a society that hinges itself on capitalism and production, saying, “I have chronic illness(es)” can be seen as a detriment. Oftentimes, people go immediately to, “Have you tried (insert random healthy thing here)” – going to the remedy. Understand that chronic illness means… chronic. That’s not to say that there is no possibility of wellness or even complete healing. It just means that most chronic illnesses happen and will happen across a long period of time, or even a lifetime. (And yes, I do have to say this because too many people ask, “Are you better yet”?)

I don’t have a ‘thesis of disclosing’, and I’m not sure that a neatly-written script is possible in every case. What I’m here to share is that since we are all temporarily able-bodied (read up on Johanna Hedva’s Sick Woman Theory and get clear on that), disclosure is a very real part of life. So, it should be met with honor, care, concern, and confidentiality (when we share something with you… we’ve shared something with you).

Going Out!

JTP: In my experience, going on on dates has been great, as long as we think creatively and carefully about everyone’s access / accommodation needs. (Which, honestly, is just good general practice. You should be doing this even in friend outings. I try not to use a lot of ‘shoulds’ in my writing, but really… it’s 2016… like… think about people’s accessibility needs).

It’s important for both of us to be mindful: is there seating around a particular venue? How long is the walk to the venue? Should I bring an assistive walking device? If someone approaches me about my handicap placard because I don’t “look sick” (yes… it happens… a lot), who will deflect the individual that day so that our date isn’t spoiled? Whose got the medicine? What does the menu look like (for dietary needs)? In the event of an illness flare up, what is our emergency plan?

Perhaps this doesn’t sound sexy. But knowing that someone cares about your safe and enjoyable access is body-roll-worthy-do-you-hear-me?!!! It’s important to extend this framework to anyone that you’re planning to go out with (in any capacity). Practicing equitable relationships and bae-ships includes being mindful of accessibility and accommodations.

Communication Ain’t a Game

JAC: You might have to come up with your own language for what is going on so that communication is easy on bad days. It’s been really helpful for my partner and I to use an alert system for anxiety. For example, “We’re having a red / orange / yellow day” (as opposed to a ‘green day’).

It’s important to share that and to share what helps / what hinders in communication. As an example, being told “It’s okay” can be the worst thing to hear at times. It’s nice to know that your partner isn’t mad at you, doesn’t blame you, still loves you, and understands the situation. But “It’s ok” really may not be the best way to communicate that. Sometimes, “It’s okay” is like nails on the chalkboard.

It might be okay for you that we can’t have sex because fibroids are making me feel like my body isn’t mine this week – which peaks my anxiety – which makes sex too hard to engage in. You might not be mad at me for that. Yet, I might be furious and frustrated that I can’t be intimate in that way, at that time. I’m not okay. So, I don’t want you to tell me it’s okay.

In regards to overall communication, you should be able to talk to your partner about chronic illness. But you won’t always be able to talk to your partner about your illness
you just won’t. Sometimes, they won’t get it. Sometimes, it’ll frustrate you. So, you’ve got to have some other folks to lean on. You also don’t have to expend extra energy making someone else feel okay about not being able to fully understand.

JTP: Right, and that’s why I appreciate the community I’ve found with other people who suffer from chronic illnesses. I’ve found a lot of this community online, in the humor of Chronic Illness Cat. There are some things that my partner doesn’t understand, but it doesn’t mean they don’t care about it.

I’ve found that asking, “Can I help” and then, “How can I help” gets us to solutions fairly quickly. There are times that my body is just going to do whatever it wants to do. So, “Can I help” is just a good starting point. From there, we can decide what needs to be done. Sometimes, it’s as easy as, “Please put your hand on my back so that I can have a bit more support”, or “Please pass me the Motrin from my bag”. It sounds over-simplified when written but in times where my body is being very… demonstrative… it’s an efficient practice.

Maintaining Balance and Respecting Boundaries

JAC: It’s important to figure out what still makes you feel like partners. There will be times where they are caring for you because you just can’t. It’s already hard feeling like a grown ass person when your illnesses tell you, “You can’t”. But your relationship shouldn’t make you feel like their child, the burden, or diminish your dignity.

There has to be mutuality in the relationship.

JTP: Right, and these can be practical things. Often, standing for long periods of time can take a toll on my body. This means that household chores such as doing the dishes can be a bit taxing. Mutuality means that I’m being honest about those things and contributing in the areas that I can, when I can. Mutuality also means that the limitations of my body are being respected and that I’m respecting the limitations of my partner’s body.

JAC: Healthy boundaries also include getting acquainted with the ways we apologize for our illnesses without saying the word, Sorry. Sometimes, we can apologize without using words (by overextending ourselves). When we don’t take care of ourselves, shit can get out of hand very quickly! Arguments and fights are often at the end of that barrel and often, you don’t even know how you got there. So, try to gauge the things that you do with / in / through your body as a way of trying to ‘apologize’ for an illness.

On Intimacy #Bodyroll

JAC: Sex requires SO much communication and your needs will CHANGE. This is true of sexual interaction in any relationship, but it’s also real when you have to juggle your desires with what your body is actually capable of.

JTP: That definitely requires some concentrated unpacking. So, perhaps a Pt. II blog post would be best. I think it’s good to rest here and pick it up again later. At this point, I’ll also open this up for my other spoonies, friends, and family who live with chronic illnesses. If you’re interested in unpacking what dating, intimacy, life, etc. with chronic illness is like, please do contact me here! I would be honored to hear your stories!

Click here to read pt. II.