Partners in Pain
K: I’m Kori. I’m in my late 20’s and I have been living with complex medical issues and various amounts of chronic pain since I was a kid. I have a connective tissue disorder that affects my joints, my breathing, my heart and my fatigue levels. I was hit by a car a few years ago which made my conditions worse and really impacted the ways I have been able to be in relationships. I'm a genderqueer trans person, and have experiences dating people in lots of different configurations of genders and orientations. I have also worked in sexual health for a number of years, usually facilitating workshops and producing community radio. I wanted to share some of the things I have learned along the way in hopes that it may offer solidarity to other folks living in bodies in pain. I also hope to provide access to tools so the people who want to date or hook-up with us can do so in ways that take our needs and experiences into consideration.
A: I’m Andi. I’m partnered with Kori and I live with them. I have my own experiences with chronic pain and mental health struggles/resilience. I have almost daily muscle tension that ranges from annoying to debilitating. It is undeniably linked to stress. Oh that pesky mind body connection! That said, I’m writing this article primarily from the perspective of an ally and caregiver to someone with chronic pain. My perspective on this kind of care is informed by my experiences as a cis-gendered, white queer-femme who is primarily able-bodied and upper middle classed. I used to be a yoga teacher - which taught me a lot about anatomy and how to take good care of all kinds of bodies. Nowadays I work and play as a youth sex educator, herbalist, witch, photographer, poet and cute pig-raising gardener.
We came to writing this piece as a team, knowing that we are only capable of speaking from our own experiences. We don’t speak for everyone, or know what will work for every body. We’re sharing with you what works for us - two people who love each other and know each other's bodies well. We both have years of experience in these bodies, learning these skills and (as sex educators) sharing these skills - but, that doesn’t make us experts, or authorities over anyone’s experience. We encourage you to take what works from what we’re sharing and leave the rest. You're the only one in your body - trust that your knowledge is important and valid! We’re going to share lots of resources throughout this piece for you to learn more. We hope you can use this piece as a spring board.
K: I think to start this off on the right foot we need to make sure there is a shared understanding of a few big ideas that we're going to touch back on throughout the article.
First up is consent. There are lots of articles throughout Scarleteen that address what consent is and why it’s important. Understanding ways to integrate good consent practice is something we are going to continue to come back to later. Consent is essentially asking permission before you interact with someone’s body. It’s listening to the person’s response - which should not be coerced. Consent can be revoked at any time for any reason. It’s all about trust, communication, and being in touch with what feels good in your body.
Second is the concept of spoons. In quick reference terms, spoons is a way of knowing your capacity. We use phrases like “I don’t have the spoons for this right now” or “I’m two spoons too few after walking up that hill” to indicate our energy levels, willingness to do something, or the impact an activity had on either of us.
When consent and spoons come together we have the opportunity to be in tune with the capacities of our bodies and find ways to communicate that capacity to each other. This all starts with listening to and getting to know your body’s limits. When you have an idea of where the limits are you can communicate those limits as boundaries. With good boundaries you can make agreements based on consent. So for example:
A: Hey you want to go out for a walk?
K: I’m down so long as it’s somewhere flat, we walk for less than half an hour and we can stop and have tea somewhere along the way.
A: Alright, I’d prefer to walk in nature than in town, can we go to a nature spot that fits within your boundaries?
K: Yeah, I won’t be able to bike/walk to there AND walk in nature - can we take the bus or drive to the park?
A: Yeah, let’s do it.
A: I think one of the most important parts of making agreements about what we are going to do with our bodies (and this applies to sex, or just general every day activities) is being able to understand and acknowledge that the expectations we place on what our bodies can do is often unhealthy or unreasonable. Not all bodies can do the same things. We aren’t robots. We're taught so often to compare ourselves to others and this often leads us to do things with our bodies that don’t actually feel right for us. Learning to understand what your body feels and needs - and accepting those needs and feelings as valid - is extremely important. This learning is something we can do in partnerships and friendships, but it starts and is most important to learn within ourselves first and foremost. You can’t be honest with someone else if you aren’t honest with yourself first. As a support person, it’s especially important to know that our partners are the experts of their experience. To be a good ally we need to be able to let go of expectations we might have of our partner’s bodies, so that we don’t shame or guilt them (even unintentionally) into agreeing to something that doesn’t really work for them. Being an ally means not only accepting, but celebrating your partner’s body, just the way it is.
K: Listening to our bodies, and being able to find ways to speak to what does or doesn't feel good in our bodies, can be especially challenging when we've had experiences of our bodies being medicalized. Going to doctors appointments and being run through medical tests like x-rays, CT scans, MRIs, having blood taken, having parts of your body measured, manipulated or moved around at the will of doctors, nurses, and radiologists can really mess up one’s relationship to bodily autonomy and consent. Lots of times medical professionals really suck at asking if it’s okay if they interact with your body, or if something is comfortable or feels alright. We can get used to being poked and prodded without being asked how we feel about it. Ideally medical professionals will have a better “bed-side manner” and find ways to offer you medical attention that doesn’t increase pain, anxiety, or the feelings of violation that tests and medical procedures can involve. It’s hard to learn, or remember, that when we're sharing our bodies with friends, dates and lovers, it’s their responsibility to ensure that whatever is happening is mutually agreeable.
A: Not every partner we have will be medicalized, or interact frequently with the medical system. But when we're in a relationship with someone who has this experience, we may be asked to help or assist them. It’s important that this help comes as a request from your partner, not something you force on them when they don’t actually want, need, or consent to it. Just because someone is in pain, or is sick, doesn’t mean they lose the ability to make decisions about what is best for their body. Viewing people with bodies that are sick and in pain as incapable of making decisions for their own well being is a belief our society teaches us to hold. That belief can create power imbalances in our relationships and leave our partners feeling disempowered and not listened to, which can lead to an erosion of trust. Our relationships can stop feeling like partnerships and begin to feel like charity or control, which won’t feel good for either partner.
When you're asked to be someone’s doctor buddy you’ll want to chat with them about what kind of support they're looking for. Do they want you to ask questions? Write notes? Be an emotional support? Speak in the appointment? Not speak? Drive them there, but not attend the meeting? It’s important that we respect the boundaries our partner sets and only offer support that is needed and asked for. Same goes when our partner is choosing a course of treatment. We can share our opinions if asked to, or if we check if it’s okay first, but we don’t get to make those decisions for our partner. When you aren’t the person who has to take the medication, eat the special diet, do the daily exercises, you don’t get to consent or not consent to the choices.
Health looks and feels differently for every person. No one gets to decide for someone else what health or quality of life looks or feels like - even if the other person’s choices don’t always make sense to us. If it makes sense to them, that's what matters. At the same time, if our partner’s choices begin to directly negatively effect us, that’s where honest communication and setting boundaries comes in. Not shame, not judgement - just honesty, compassion, curiosity and kindness - for both you and your partner.
K: Having a buddy through appointments and routines can be really incredible and helpful. Sometimes the stuff that comes up in a doctors appointment can be too much to hold alone. Sometimes staying present in appointments can be nearly impossible. Disassociation can be a survival mechanism that our bodies engage when navigating difficult procedures and complicated interactions. Having someone advocate for you when you may not be fully present to advocate for yourself is a life line.
Having another person to help hold what you’re going through and help share in building healthy habits, like stretching, can also be really great. If I don’t do some stretching or moving of my body in gentle ways on most days, my pain will get worse. A lot of the time finding motivation to do this type of activity is tricky. Like it’s explained in the spoons theory, stretching will make sleeping easier, moving around easier, and it could give me an extra spoon the next day. Doing the stretching may take a spoon and getting down to it, making it actually happen, that can take one too. When I have someone to share in that, it's like doubling up. Its’ a nice way to spend time with someone I care about, and they are helping me do something I need to do to be well in my body. This also applies to food. Sharing in cooking or clean-up can mean a big difference. Sharing tasks may leave me with a bit more capacity in my body to make out or get down.
A: Supporting each other in building healthy routines has been really helpful for us. In the morning we wake up, clean the kitchen, make a healthy breakfast, drink coffee or tea, take herbal medicine, read a tarot card each, try to move around in our bodies (dancing or stretching), bring in firewood and make a fire. We have these tasks written down on a piece of paper on our fridge and we go through each of them before we turn on our computers or check Facebook. Doing these things together helps us feel more grounded and well in our bodies. This, in turn, helps our moods, communication and ultimately the quality of our sex life and relationship generally.
As a support person, it’s also important to remember that you’ll need your own self care routine. For me, that’s going to the woods by myself, writing poetry, journaling or reading a book in the bath. I love Kori, but I need time away to take care of myself, recharge and get in touch with my needs and feelings. Kori needs this time away from me too. That’s why we have separate bedrooms, even though we live together. Sometimes it can be hard to have a clear sense of your needs and boundaries when you're taking care of someone else, but that sense is important and necessary so that you don’t burn out, or feel resentful towards your partner because you're neglecting your own needs. This is true for every relationship, chronic pain or not.
K: So are we ready to talk about sex then?
I remember this relationship I was in right around the same time as my accident. I was dating someone else who had really similar experiences of pain and inflammation in her body. When we'd hook up we would often have to stop, take breaks, get pillows to help prop our bodies, change positions, or just cry and laugh together about the bizarre and often painful ways our bodies would collide when we were most excited to be together. I hadn’t really learned about how to integrate my body’s limits into my sex life, especially the new ones I was still mapping out after my accident. Being with someone else who was learning and practicing the same type of thing made space for me to learn more about how to do this well.
I've carried on the practice of trying to predict my energy levels and communicate desires accordingly. I check in throughout sex to let my partners know where I'm at, and so I can know what’s going on for them. Some times that means we won’t get as far as we may have hoped, or that what happens is a modification on what we would want in our dream worlds.
There are tools that can be used to help ease the pressure that highly physically demanding interactions, like sex, have on our body. Using a vibrator on your partner could be useful, as well as things like the liberator wedge or specific furniture like the IntimateRider. Modifying toys with handles or straps so that you can utilize the parts of your body that have the most capacity or least pain can be a low cost, DIY project. If hip or back pain makes using a strap-on or having penis-in-vagina sex hard, using a thigh harness or a toy with a handle can help minimize the chances of back pain during penetration.
A: And this brings us back to consent again. For me, consent is just as much about giving permission as it is about getting it. For any relationship, and especially one where folks have chronic pain, it’s important to know that what feels good today might not feel good tomorrow (or even in 5 minutes from now). What feels good for one body may not feel good for someone else. That’s why we need to ask, and ask often. When we have sex we ask lots of questions. “Does this feel good? No? Okay, what if I do this?” “Do you have any suggestions?” “What would feel good to you?” “How much pressure feels good right now?” “Can we stop for a minute? I need to put a pillow under my hip.” Taking the time to stop and check in means we learn what feels really good for each other. It makes sex more fun, deep, and connecting. And remember, whatever you partner’s answer - don’t take it personally. If something doesn’t feel good it doesn’t mean you’re bad in bed! It just means it doesn’t feel good.
Listening is the skill that is the most important as a lover - trust me on this one. It’s important to take your time and give your partner a chance to take a breath, notice how they feel, really connect to the sensations you're both experiencing. Sometimes this is a quick check in, and sometimes it takes time. Either way it should happen multiple times whenever you're being physically intimate. It may also mean that we don’t focus so much on reaching a climax (which isn’t possible for everyone’s body, or each time they have sex) as we do on treating each other (or ourselves, if we’re going at it alone) as sacred, cherished and lovable beings worthy of kind touch and support. That support (and what feels hot, sexy, exciting) will look and feel different for each person. Discovering what it looks like for you, or your partner, is all part of the fun!
K: Really good point about giving time for a true check-in. As people in pain we can be given the impression that we are a "burden” when we let people know how much we're actually dealing with. We can downplay our pain levels and try to act more capable than we actually are. Being incapable sucks, and it can feel really annoying to be left out of activities you can’t participate in. So sometimes we try and force ourselves to do more than we might actually be okay with.
I really appreciate when my partners ask me how I am doing, and encourage me to really ask myself what the true answer is to that question. Sometimes that answer won’t be easily expressed with words, it might be easier to explain things as a number (like a pain scale), or using colors or markings (like a pain-map: you can make one on paper, use an app, or even use markers right on your body), or sometimes with growls and grunts. Usually, if my pain levels have reached a point where grunting and growling are the easiest ways to communicate, I'm probably past the point where I'm going to be able to share my body in intimate and vulnerable ways. It really helps for my partners to know this, so we can make strategies for communicating what we each want, how, where, when, etc. You know, back to that whole consent thing.
Living in a body that is challenged by pain, mobility issues, medical devices and experiences of medicalization can suck sometimes. It’s important to remember that it also gives us a special perspective. Bodies that have learned to live through adversity have built resilience. While there can be a tendency to talk about disAbled bodies in a way that makes them into inspirations (especially to sell products), this is not what I am trying to do here. I'm not happy for the pain I live with, but I'm grateful for some of the lessons I've learned through living in my disabled body.
Another angle of this that is important to keep in mind, is that being in pain, or having a disability, shouldn’t in itself make you less desirable or date-able. People can incorrectly assume that people living in disabled bodies aren’t sexual or romantic, or don’t want to or can’t be in relationships. Don’t settle on being with someone who doesn’t treat you right, or who isn’t someone you want to be with, just because they're willing to be with you and your pain. This is especially true if it seems like there are exploitative dynamics intersecting with care-giving and intimate relationships. Some people date people with disabilities in a way that takes advantage of them or exploits power- this is an abusive dynamic.
A: I have never been much for traditional “dating”. Personally I think it’s kind of boring and unoriginal. I’ve found it can feel forced and it can be really expensive. Recently I came across an article I really love: 10 Crip Date Ideas.
The main thing to focus on is connecting and making dates that feel fun and not too energy intensive for your partner. If you need to make popcorn and stay in, rather than go out to a movie, that should be not only okay, but encouraged. Taking care of ourselves should be the highest priority in a relationship that is about support and care. There needs to be space for your love (or you) to feel tired, sad, sore, depressed, angry, unable to go outside, unable to go up stairs etc. Without that space we tend to focus constantly on what we are missing, rather than the richness and closeness we can build by being there for each other. Sometimes this perspective can be hard to take because we live in a society that devalues bodies that are sick or in pain. This is related to a kind of oppression called ableism - the system which empowers certain kinds of bodies over others, and makes access to spaces, places, experiences and resources more challenging for some people than others. We can all learn to understand, unpack and challenge ableism in ourselves, our relationships and the world. There’s tons of great resources and projects that you can access online to learn more. We’ve given links to a bunch of them through-out this article and even more below.
K: Obviously your experiences are going to be as unique as you are. Our bodies, abilities and capacities can and do change over time. We hope that you're able to take this information and the resources we’ve included and put them to use in ways that feel suitable for your life. We wish you experiences of support, fulfillment, passion and love. Remember - you don’t deserve anything less.