Giving ‘The Out’ is Rooted in Systematic Ish (but still important)

Giving ‘The Out’ is Rooted in Systematic Ish (but still important)

photo of a femme and a masc hugging with a white overlay and black text "Giving 'The Out' is Rooted in Systematic Ish (but still important)" and "Chronic Sex"

There are many experiences that transcend illness or disability type. One of those is giving partners ‘the out.’ Having that conversation is, oddly enough, something I’ll never regret. What I do regret is why we’re having these conversations.

For many of us, this conversation comes from a combination of feelings. Those feels, though, are a problem. They come about from insecurity, shitty self-esteem, ableism, and more.

We don’t feel worthy of love because we’re sick or disabled.

I know that feeling well. It sucks. Even more importantly, though, it’s so wrong.

You are so worthy of love. We all are. How much we are loved should never be dependent on our health, race, ethnicity, gender, sexual orientation, or other factors we can’t change.

Ableism is a jerk

The thing I hate most about internalized ableism is how we can’t always recognize that it’s ableism speaking. We think we’re doing abled people a favor by staying small or assuming they wouldn’t want us as partners.

We’ve taken that message that our health makes us lesser, unable to be partners that truly participate in relationships. Instead of being present in our relationships, we feel guilty that we can’t be the perfect partner. Sometimes we take to praising our abled partners for sticking with us as if they deserve a medal of honor. To save our partners, we don’t share how we really are doing, the pain we’re in. We think we’re being noble when what we’re doing is harming our relationships in the long run.

Of course, the flip side of that ableism is not being seen as desirable from outsiders. It’s not completely their fault – thanks, society! – but it surely doesn’t help when people see us as objects of pity. They don’t understand their privilege, how harmful it is to treat us that way, or really how to be in a relationship with us.

Giving ‘the out’ can still be helpful though

With my husband’s depression and how all-encompassing it can be, I have been able to see both sides of this. It’s hard to be someone’s partner when you know you can’t help heal their wounds. It takes a toll on even the strongest people. That’s part of why I think conversations where we give ‘the out’ – tell our partners it’s okay if they can’t handle our shit – is important.

It brings up conversations about what we feel like we can handle. As hard as it is to say, it can help us weed out people who won’t be there for us when things are hard. There are a lot of people who aren’t dependable when the shit hits the fan. I don’t know about you but knowing that early on is helpful – it tells me to not waste my limited and precious energy on them.

Sometimes it can solidify that we’ve got a great partner, too. In unofficial ways, I’ve given ‘the out’ to my husband a few times. Each time, I get hit with the knowledge that – for the first time in my life – I have unconditional support. My partner, my family, is here for me. That reinforcement is so important for me because I’ve never had that, not in a non-abusive way.

I won’t say it’s completely perfect. To be honest, it’s a little scary – I’m used to everyone leaving at some point or another. Still, to have that kind of support – to know I have a partner who will wash my hair for me when I can’t move my fingers – is comforting. In middle of everything that is so chaotic and unpredictable with my health, having someone serve as a rock is exactly what I need.

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Why I Don’t Fawn Over My Husband

Why I Don’t Fawn Over My Husband

a photo of two people (one male one female) on their wedding day laughing with a cut out design on the front; "Why I Don't Fawn Over My Husband" in green and "chronic sex" in white underneath that (bottom-right)

On my personal site, Not Standing Still’s Disease, I call my husband ‘T.’ If you see it here, that’s why.

I haven’t talked about my marriage as much on here as I have elsewhere.

In September, we’ll have been together for a whole decade… which is a little daunting to think about. It feels like longer and shorter at the same time. Sometimes I forget if it was him or someone else I went to events with.

an off-center photo of two people kissing; the main person is wearing a white tee with red text on it and has shorter dark hair; the person on the right is wearing a green shirt with five o'clock shadow and glasses barely visible

When I met him, I was pretty sure we’d get married. After the last few relationships I had, I knew I wanted to disclose my chronic health issues early on. I’d been led on by a few guys who claimed they wanted a long-term relationship but only wanted sex.

I mean, I was 19 so sex was totally fine with me! Mostly I was tired of the deceiving part.

T and I got frozen custard and I mentioned that I had “this arthritis thing.” The way I phrased it really helped him to not catastrophize it. Then again, that’s when I didn’t have medical care and wasn’t diagnosed with most of my other health things.

I interviewed T in 2012 for NSSD. Check it out here. Ironically, that was also the first year I started talking about how arthritis crud affected our sex life.

It’s no secret that my health fun has been hard. It seems like it keeps getting worse, like now when I’m dealing with undiagnosed stuff. T’s still supportive and as helpful as ever. He still takes a lot in stride, holding back a lot of stuff he should probably tell me (like how my lack of vacuuming bugs him, etc.). Add to that how us both being on antidepressants has killed our mutual sex life and… well, you figure out quickly why I review sex toys.

Still, he’s my penguin.

two white people are seen hugging/leaning on each other from behind while sitting next to each other; the male on the left has a plaid shirt and brown hair; the female on the right has a white shirt and reddish hair; trees and foliage are in front of them

I see a lot of disabled or chronically ill people who overly praise their partners. That’s something I felt pushed to do in the beginning when I knew no other 20-year-old would put up with massaging my knees. Now that we’re on either side of thirty and both well-versed in social justice, I don’t feel that way.

Don’t get me wrong – he’s awesome. Our relationship is good. Things – including my illnesses – are stable and at least semi-predictable. We’ve gotten into a rhythm that works for us, have both gotten better at communication (after a number of stumbles on my part), and I know how to read him pretty well.

The thing is… praising him for sticking with me when I’m so fucking ill just perpetuates the myth that those of us with health crap are horrible choices for partners. I won’t fall into the ableism trap that is more-abled-partner worship.

Mountain photo with the following overlaid in white text: "Ableism: THE SYSTEMATIC OPPRESSION OF DISABLED AND CHRONICALLY ILL PEOPLE THROUGH LANGUAGE, ACTIONS, AND OTHER FACTORS" and "Chronic Sex" at the bottom-middle

People fall into this trap a lot. It’s easy to do, given messages we receive about our worth as people who are chronically ill or disabled. It’s assumed that our lives aren’t worth living or that we should be somehow pitied because of our existence. When we worship our partners for ‘putting up’ with us, it just reinforces those ideas.

The world is full of assholes who don’t see disabled people as people. They don’t think living our struggles with us is a worthy journey. That doesn’t mean we should sanctify the non-assholes, though, for being decent people. The reality is that we all have different needs in relationships, whether that’s related to a disability, past experiences, abuse, or a variety of other factors.

Like any person, disabled or not, we all have positive and negative attributes. When you’re a partner, though, you work together and can help to balance each other out.

Sure, there will be more time spent at doctor appointments or sitting in waiting rooms while I get MRI after MRI than there would be while dating an abled partner. There will be more frustrations with health, the medical system, and other forms of systematic oppression. Politics will start mattering to you even more, especially attacks on health care rights… which means you’ll be groggily going to work after staying up until 2 in the morning watching C-SPAN.

That said, I can provide a lot more empathy than the average partner. I’m pretty good at working around things I can’t do, whether that’s sexy or not. You’ll get to help go through pictures of me that are sexy for the sake of being sexy. You’ll always have someone who goes with you to doctor appointments and can advocate for you, there or calling to order pizza.

Just because some parts of our lives are harder because I’m disabled doesn’t mean I’m not a badass partner – or that I should feel crummy for being sick. Without that power difference, there’s really no need to put T on a pedestal. I can still appreciate the neck rubs and late night conversations without deifying T for ‘putting up’ with my illnesses.

Are You Tired of Cishet Studies on Relationships and Pain, Too?

I was really excited to see a new study come out saying that a touch from our partners can help relieve pain. It’s one of those obvious things, especially to anyone who knows about how our brains release oxytocin. The hormone has long been known to relieve pain as well as being the ‘love’ hormone.

It increases bonding between people, especially when they’re physically close to each other. For example, it’s released during sexual activity!

I wanted to know more about the study, so I turned to their free journal article on NCBI.

Write-ups don’t tell the whole story

One thing I found interesting was that the study is also heavily focused on empathy. Sure, a loved one hugging you while you’re in pain may help – but it helps more if they care you’re in pain, too.

Additionally, they studied both respiratory and cardiac response in both partners as well. Heart and breathing rates in the non-pain partners tended to try to match those of the pain partners when touch was involved. When pain happened without touch, this didn’t happen.

Anyway, I was excited to see that someone verified something a lot of patients and providers have known for a long time…

Until, you know, I realized this study was only done on cishet couples.

Why are studies always on cishet couples?

From the study write-up:

Dr. Goldstein and colleagues gathered 22 heterosexual couples for their study, who were all aged between 23 and 32.

The researchers asked the couples to participate in a range of tests that replicated the experience of being in a delivery room.

The female participants were assigned the role of “pain receiver,” while the men were “pain observers.”

There’s some good ol’ fashioned sexism in here, too, right?

Barf.

In their limitations section in the journal article, researchers discuss how only females underwent pain and males were the outside partner. They do suggest that there need to be similar studies on same-sex couples, but neither address any other LGBTQIA+ community nor why they chose only cishet couples to begin with.

It’s 2017. Why is it that LGBTQIA+ people still aren’t being involved in research? How meaningful is research when it leaves out an increasingly sizeable chunk of the population?

We need inclusive research

KLB Research logo with tagline: valuing diversity in academic research

I had the pleasure of seeing Dr. Karen Blair of KLB Research speak at the Guelph Sexuality Conference.

Karen was in college when she discovered she was a lesbian. As a result of taking sexuality courses, she began wondering why cishet couples were always the ones in research and books. So, like all great innovators, she started doing the research that needed to happen.

Dr. Blair even did a study right after the Pulse massacre to understand how this was affecting the LGBTQIA+ community. Listening to her speak about the Pulse study was incredibly profound. There’s even a follow-up study accepting participants.

What can we do?

We need more people like Karen – and more awareness of the work she and others do on inclusive research.

Share studies looking for participants whenever you can. Support or participate in The Pride Study. Stay tuned for when ORCHIDS gets going.

Demand more representation. When studies come out and don’t include anyone other than white cishet abled middle-class Americans, we have to speak up and share that this is not reality. This is not inclusive research.

Edit: Our pals over at Clara Health just wrote about the lack of LGBTQQIA2+ representation in studies. Check it out.

What a High Pain Day Taught Me About Hiding My Illnesses

TW: mentions of covert incest. This first appeared on our Medium publication page in November 2016.

I have always been someone who takes care of others.

It’s something that I have had to do.

Growing up in an abusive home, I had to take care of everyone — more emotionally than physically, but both for sure. I was the emotional partner for my mother, something called Covert Incest.

Because of that, I’ve always been incredibly independent. I have never wanted anyone else to feel like they had to take care of me. That goes double for my marriage, frankly.

Part of it is that I internalized the ableism that goes along with someone marrying a chronically ill/disabled person. I mean, after all, the expectation is that the ‘well’ one has to take care of the ‘sick’ one. Between that and my independence, I have never wanted my partner to feel like he had to take care of me.

He recently had LASIK and then got a cold a few weeks later, so I’ve been used to taking care of him. It wasn’t even a thing that I was worried about. He needed care and I was here. I mean, DUH.

Lately, maybe because of being more of a caregiver, I have been better about sharing and showing how I am doing and, in turn, my partner has been incredibly understanding and helpful.

Sunday morning, I woke up with intense stomach pain at 3 AM. It was clear that I needed to use the bathroom, so I did so. I spent a while in there, crying because the stomach pain was so bad. Frankly, I was wiping as quickly as I could because I was in so much pain that I thought I would puke, too.

It was not a proud moment.

By the time I was done, 20 minutes had elapsed. My stomach was still in an incredible amount of pain, so I went to the couch instead of my bed. I didn’t want to wake T up and, besides, I wasn’t sure sleep would visit me again.

It did, eventually.

When I woke up again, I was sure that I would be in a ton of pain. I wasn’t, which was perplexing, but I wasn’t going to question it, either.

And then, it happened.

A brick wall with an overlay that says ‘fuck this pain’ and a fancy curly doodle underneath

Over the course of a short time — something under five minutes — my pain went from not-an-issue to holy-fucking-shit-why.

Everything got heavy. I was barely able to hold up my phone. My muscles felt like what I assume they would feel like if I was able to run a marathon or do the Ironman.

I couldn’t hide it.

T asked if I was tired and I explained what was going on.

“What can I do? Ice packs? Biofreeze?”

Without hesitation, he jumped in and helped with whatever I thought might be helpful. A few minutes later, he had grabbed the Biofreeze and we slathered my arms. He snagged me an NSAID, too.

I don’t care if I can’t do much with my legs, but being unable to do much with my arms is a problem.

Within probably 30–45 minutes of the onset of the pain, I was asleep.

When I woke up, the initial pain was eased. My muscles were still in an incredible amount of pain, though.

T took me to our bedroom and asked what he could rub to help. He rubbed my hands, my feet, and my knees.

I apologized to him for all of this. I’m so good at stepping in and taking care of him, he said. He figures that I know how to best take care of myself, so it’s not a thing.

“But I’m always here to help when I can.”

In that moment, I realized a lot.

As vulnerable as so many applaud me for being, I still have a long way to go. I’m not nearly as vulnerable as I pretend I am.

I try to not let others see my illness fun firsthand. When I’m feeling bad and T’s at work, I talk on social media but rest. I write about what I’m going through, but in a safe space — at home, usually alone, and usually feeling slightly better than the time period I’m writing about.

This goes double for when I am sick at home. I cancel calls or FaceTime meetings with friends. I hide the extent of my illnesses from everyone — even T.

I have to stop pretending that I’m fighting against my illnesses on my own. The reality is so far from that — I am surrounded my love and support, and nowhere else is that true than at home.

Black and white photo of a bride and groom dancing

Why It’s Hard for Me to Communicate on my Illnesses and Pain

A few months ago, my husband and I had our first real fight after nearly a decade of being together. It had to do really with my lack of communication on how I’m doing. As much as I help others with communication skills within relationships, I’m not great at verbally communicating my own illness fun. It’s how I started writing about everything so, ya know… I just wrote this to him as a way to share more of my feels. This piece originally appeared on our Medium publication in February.

Hey love,

I know it’s hard for you to see what I’m going through. Invisible illnesses don’t make it easy for people to see all the ways they impact my life. I’ve gotten pretty good at coping with my illness fun, too, which doesn’t make it easy to tell when I’m struggling. Like a prey animal, I hide when my pain increases because it makes me vulnerable. I become an easy target for people to mock or harm.

Despite all this work I do with others on communication, I’m not great at it myself. I know that if I communicated what I’m dealing with better, it would improve both of our lives. It’s hard, though.

Just like showing my illness fun is vulnerable, talking about it is, too… except on steroids.

It’s easy and commonplace for me to notice my own pain or how my illnesses are being exacerbated on any given day. I have to do this in order to survive my day. Living is full of calculations for me —

Which extra medications do I take at which times? When do I use the ‘big gun’ medicines? Which of my non-medicinal relief methods can help, and in which order should I use them?

This has all become as natural to me as breathing.

Everything I do and experience is colored by pain and illness, even on the best days. When I talk about all of this, it reminds me how sick I am. It’s just a reminder of how differently you and I experience life. I know that my illnesses and pain doesn’t mean I’m lesser than you. Still, my depression and anxiety love to play on that.

It makes me scared, too. I get scared about how sick I am and how many more rough than easy days I have lately. I fear for what this means for my future — our future. My anxiety takes over and wonders:

Are my medications working? Do we have to switch again? I’m running out of options. How long will I live, then?

And then I wonder how long you’ll stay.

You say you won’t leave. Part of me knows you won’t. Still… there is so much evidence against relationships and illness. I can’t help but worry about this. How sick can I get before you decide it’s too much, even if you don’t tell me?

When I can’t cope as well with all this, it also makes me feel like a failure.

I’ve been sick since I was five. I’m so adept at hiding how painful existing is for me. Even physicians often don’t believe how pained I am because I smile and laugh.

The truth is, if I didn’t do those things, if I didn’t hide how I’m doing, I wouldn’t survive. If I had to talk about every single thing I endure and the pain I experience, it would remind me of how subpar all this makes me feel. It’s not easy on my mental health.

I know that my lack of communication sometimes makes living with me difficult. I promise that I will work on communicating better, even if we use code words for things. I will try to be more open about how I’m doing, what I can do, and what I need.

But I need something from you.

When I talk about my pain and illness state, please listen. Ask me questions. Hold my hand. Hold me. Recognize how hard I’m trying to break this habit of hiding.

It isn’t easy and it won’t happen overnight, but I’m trying.