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.

[photo of a person with short dark hair; overlays of the Woodhull graphic and a white text "#SFS17" | pink overlay with white text reads "disability, illness, & pain don't remove sexuality from our lives. Sexuality doesn't depend on ABILITY -Kirsten Schultz"]

Off to Woodhull

I’m heading to Woodhull’s Sexual Freedom Summit for the next few days.

Hedonish and I will be presenting Saturday morning on how pain disorders can affect our sex lives – as well as how to counter that.

I’m incredibly grateful to the SFS17 sponsors as well as The Woodhull Foundation for having us.

Make sure to follow along on our Instagram, Twitter, and the #SFS17 hashtag across social media. If you’re attending, too, make sure to say hi!

B&W pic of two people holding hands; white text "Tips & Tricks to Telling Your Partner(s) You Have an STI" at top-middle and "Chronic Sex" at bottom-middle

Tips & Tricks to Telling Your Partner(s) You Have an STI

Telling your partner or potential love interest that you have an STI is never the most pleasant conversation to have, but it’s one of the most necessary things to discuss. Before you have the big conversation, it’s natural to fear rejection. Your partner may be scared off by your status, their potential risk, or stigma associated with STIs.

Here are some steps to take to make the process go a little smoother.

Tell Them Before You Have To

If you aren’t already in an established relationship of some sort, it may not be wise to enter one without disclosing your STI status. While it’s not necessary to tell everyone you meet about your STI status, you shouldn’t wait too long to disclose it to an individual you’re considering being intimate with. As soon as you know that things may be headed in that direction, it’s best not to wait. The person receiving the news may get frustrated if they feel as though you’ve kept such a vital secret for so long – or you may become frustrated if they end your relationship because of this knowledge. Just like with a chronic illness or disability, disclosing early can save you from becoming invested in someone who will wind up hurting you down the line.

You deserve more than that.

Pick the Right Place and Time

Waiting until you’re in the heat of the moment to disclose your STI status is a bad idea. It can result in anger, frustration, and other negative emotions that can kill a relationship. Like any difficult conversation, you should do it away from the bedroom, fully sober, alone together, and with words prepared.

If You’re Non-Monogamous

This is a great time to discuss how to protect yourselves and each other going forward as well as how often you will get tested in the future. Knowing your status is important for both of you as well as any partners you have.

If You’re Monogamous

If you’re monogamous and contracted the STI from someone who is not your partner, this is going to be difficult news to deliver. It’s important to be both honest and forthcoming.

If you’re positive beyond the shadow of a doubt that you got the STI from your partner, the worst thing you can do is overreact and create an escalating situation. Since many STIs don’t cause symptoms, it’s likely your partner didn’t know their status from before you were together. If you suspect cheating is a factor, bring it up in a straightforward way.

Take Them to Get Tested

If there’s any risk at all you might have exposed your partner to your STI, ask your partner to get tested. If you’re currently in the process of treating away an STI, it might be a comfort to your partner to see your exit paperwork that shows you test negative for your STI when that time comes (if applicable). Click here to find testing locations near you.

Make sure you and your partners get tested regularly if you’re non-monogamous.

Learn Your STI Facts

Some STIs never go away, but can be controlled with treatment. For instance, if you have HIV, having an undetectable viral load means you cannot pass on the condition to others – regardless of whether or not a condom is used. If you have a curable STI, let your partner(s) know how long you’ll need to receive treatment before you’ll be given a free and clear status – and practice risk aware sex in the meantime.

This piece was written in part by David Beeshaw, a blogger and an advocate of sexual health, supporting raTrust – a non-profit organization dedicated to STI and HIV prevention. 

Awareness Calendar for August

Month:

  • Alternative Sex Month
  • Anal August
  • Autoinflammatory Awareness
  • Gastroparesis
  • Immunization
  • Psoriasis

Day/week:

  • Minority Donor Awareness Day (1)
  • Grab Some Nuts Day (3)
  • Underwear Day (6)
  • Klippel-Feil Syndrome Awareness Day (6)
  • Severe M.E. Awareness Day (8)
  • Internet Self-Care Day (21)
  • A Day for SJIA (22)
black background with a white flower, green stem, and large stamen; white text above states "It's National Orgasm Day" and white text below: "chronic sex"

It’s National Orgasm Day

It’s National Orgasm Day!

Check out the below articles on orgasms. Please note, though, they’re likely to be cisheteronormative (sorry).

5 Surprising Facts About The Female Orgasm

8 Facts About The Female Orgasm Everyone Should Know

8 Fun Facts About Orgasms for National Orgasm Day

11 Orgasms A Trans Woman Can Have

11 Reasons You Should Be Having More Orgasms

15 Scientific Facts About Orgasm

18 Facts About Female Orgasms Every Woman (And Man) Should Know

35 Eye-Opening Facts About Orgasms {gifs in link}

How Trans Women Are Reclaiming Their Orgasms

The Power of Orgasm

Go forth and celebrate!

B&W pic with white text at bottom 'My Boudoir Shoot' 'chronic sex' - pic is of Kirsten silhouetted with a black leather skirt and dark bra on arching her back in a chair against a lit window background

My Boudoir Shoot

Earlier this year, I was struggling with my body. My gender dysphoria is pretty rough lately. As a genderfluid person, sometimes I really dislike the feminine parts of my body. They seem to get in the way a lot.

I booked a boudoir session with Studio M Boudoir {autoplay music & slideshow in link} using a Groupon.

In the weeks before the shoot, I honestly thought of canceling and trying to reschedule. I’m really glad I stuck with it, though.

On the day of, I was excited, but not as much as I felt like I should be. I was crunched for time and nervous as all get out. Once I got to the studio, though, Melissa made me feel so at home.

I mean, it helped that she checked out this site, too. We talked about shared interests and job stuff both before and after the shoot. It was seriously a lovely time.

Here are some of my favorite pics from the shoot:

B&W pic of Kirsten silhouetted with a black leather skirt and dark bra on arching her back in a chair against a lit window background

B&W: kirsten on her stomach on a bed; she has on a dark bra and dark panties but with a blue plaid shirt on; her right arm props up her head while she smiles, left leg is extended out, and right leg is up in the air

B&W pic of kirsten from above; her dark bra is showing and her plaid shirt is falling off her as she is on her back; her right arm is under her chest as though she's hugging herself; left hand is on her left leg; feet are both against the dark headboard

color pic of kirsten laying down tangled in sheets (which cover the good bits) on a white bed with short red hair; pic is taken from end of the bed so K is upside down, legs crossed and bent at the knees, right hand on sheet on chest, and left hand up beside her head; she's smiling/laughing

color pic of kirsten sitting on the edge of the white bed wrapped in a white sheet a la a mermaid; short red hair; pic is taken from above so K is looking upwards and smiling; the left hand pulls down some of the sheet for cleavage and the right is nearly hugging her again; left leg pokes out of sheet

color pic of kirsten sitting on the edge of the white bed wrapped in a white sheet a la a mermaid; short red hair; pic is taken from above; K is looking away white smiling and laughing with eyes closed; the left hand pulls down some of the sheet for cleavage and the right is nearly hugging her again; left leg pokes out of sheet

The others are butt pictures, and those stay here at home 🙂

Seeing these pictures now, I feel more confident in my gender identity. Some days, I may want to embrace my curves and be very feminine like Ariel (the Little Mermaid, who I seem to dress like often lately). Other days, I may hide all that under dark plaid shirts like the queer person I am.

From an illness standpoint, I’ve been dealing with a lot of pain lately. Because of that, it’s easy for me to hate parts of my body. I stop seeing them for what they are and what they bring and start seeing them for the pain they cause. On top of that, I’m the heaviest I’ve ever been and feel unhappy about that at times.

It was really nice to be reminded that these parts of me can still be beautiful, can still be useful, and that being a curvy girl isn’t a bad thing.

Should you do a boudoir shoot?

It was an incredibly affirming experience. I really lucked out with Melissa and Studio M. I did a lot of research before using them and was surprised at how awesome they were, even then!

I recognize that I have a lot of privilege in being able to have had this experience, though. Shoots and then the photos themselves can be quite expensive.

I will say that, if it’s something you can afford, it can be very healing.

Have you ever done a boudoir shoot? What did you think?

purple box-shaped graphic with a light blue scalloped line inside surrounding a B&W picture of a femme writing in a notebook with a pen; over the photo says 'WEGO Health Activist Awards: I'm Nominated' in yellow and the bottom of the photo says 'chronic sex' in white text

WEGO Health Activist Awards: I’m Nominated

I am excited to announce that I have been nominated for a ton of categories in the 6th Annual WEGO Health Awards – Best Kept SecretPatient Leader HeroBest in Show: Blog, and Advocating for Another.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often do so without recognition.

I’ll be honest – I’m not sure who y’all are who nominated me, but you’re beautiful. It’s been a rough couple of years and I’m not always sure anyone is listening, watching, or paying attention to the work I’m doing. Don’t get me wrong – I’m not doing it for accolades, but it’s nice to get a pat on the back once in a while at the very least.

purple-tinted photo of a person's hand giving a thumbs up on the right; on the left, a golden outlined purple text box says "WEGOHealth Awards" with smaller orange text below saying "endorse me today!"

This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. How cool is that? It’s a big deal and would be a great thing for any of us to be able to attend. If you’d like more information about the summit, you can learn more here.

I’m now looking to my incredibly supportive network to help endorse me for this award. The best way to help out? Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.

If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for this award. You can continue to nominate and endorse your favorite health activists until September 1st.

sepia-toned photo of two people holding hands - only the hands are really visible against a desert-like backdrop - both hands have a lot of jewelry on them - a white overlay on top has black text over it asking "Are You Tired of Cishet Studies on Relationships and Pain, Too" and the same setup below says "chronic sex"

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.

Awareness Calendar for July

July is the awareness month for:

  • Cleft & Craniofacial issues
  • Cord Blood (esp. banking)
  • International Group B Strep
  • Juvenile Arthritis
  • Minority Mental Health
  • Tickling!

Don’t forget these important awareness days, too:

  • Heterochromia Day (12)
  • Stress Down Day (24)
  • National African American Hepatitis C Action Day (25)
  • World Hepatitis Day (28)
  • Orgasm Day (31)

Go forth and be awesome!

Want to add anything? Leave a comment below!

a hand holding a sparkler against a dark background - white fancy text says "4th of July sale!" at the top while all-caps white text in the lower righthand corner says "save 25%off everything!! Code: Fireworks"

Vibrant: 4th of July Sale

Our pals over at Vibrant are having a 4th of July sale starting TODAY!

You can save 25% off anything on their site using the code FIREWORKS. Hurry though – you only have until 11:59 pm Mountain Time on the 4th to shop!

Plus, you get free shipping on orders over $50. All proceeds go to support the Planned Parenthood of the Rocky Mountains, too! So what are you waiting for? Head over to Vibrant today!