"communicating with your partner 101" - two photos, one with two people holding hands and another with two people hugging

Communicating With Your Partner 101

Communication is the foundation of any healthy and lasting relationship. That shouldn’t be a surprise. After all, no partner can read minds or guess what you need at all times. Most of the questions I get really boil down to partners not communicating due to fear, worry, stigma, and more.

The truth is that communication isn’t just stating facts and opinions. It’s the way we express emotions, empathy and support. One of the most important aspects of communication with your partner is telling them how you feel about them and expressing your appreciation, love and commitment. These words of affirmation and validation can make a huge difference in your relationship and strengthen the bond between you and your partner.

Let’s dig into some of the important things that you and your partner need to do so that you both feel loved, appreciated, and supported.

Continue reading “Communicating With Your Partner 101”

Hypermobility and Sexual Function Study

hypermobility and sexual function study graphic

Sexual Functioning and its Impact in Relation to EDS

Researchers: Tom Virden, Ph.D. (he/him) & Brona Hagins, M.A. (she/her) at Midwestern University

In layman’s terms, this study is to assess how hypermobility/EDS may negatively impact gynecological health, sex, and relationships. Therefore, it is only open to those who were

  • assigned female at birth,
  • aged 18 years or older,
  • and who have a hypermobility disorder such as Ehlers-Danlos Syndrome (EDS).

This research study is open to those who have been diagnosed with a hypermobility spectrum disorder (which includes Ehlers-Danlos Syndrome (EDS). The purpose of this research study is to understand the gynecological impacts of hypermobility.

The questionnaire will assess gynecological concerns and their impact on individuals with hypermobility regarding avoidance, fear, relationships, sexual dysfunction, and quality of life. Quality of life will be assessed using the World Health Organization Quality of Life brief scale (WHOQOL-BREF). Sexual dysfunction will be assessed using the Female Sexual Functioning Index (FSFI).

Original questions are follow-up questions to the two included measures, such as sexual functioning’s impact on various relationships.

The study aims to assess the psychological and day-to-day impact of gynecological concerns in hypermobile individuals. Additionally, it will provide guidance as to the gynecologically-informed treatments utilized/recommended in the hypermobile population.

We’re inviting you to participate in a research study. This study consists of an online survey. You will be asked to complete a series of questions about your sexual health and gynecological functioning. This survey may be completed on any computer with internet access. You are free to skip any questions that you would prefer not to answer.

Participation is completely voluntary. If you agree to participate, you can always change your mind and withdraw. There are no negative consequences, whatever you decide.

  • If you have any questions about or do not understand something on this form, you should ask the research team for more information.
  • You can and should discuss your participation with anyone you choose, such as family or friends.
  • Do not agree to participate in this study unless the research team has answered your questions and you decide that you want to be part of this study.

Some questions may be very personal or upsetting. You can skip any questions you don’t want to answer or stop the survey entirely.

  • Online data being hacked or intercepted: This is a risk you experience any time you provide information online. We’re using a secure system to collect this data and are not collecting identifiable information, but we can’t completely eliminate this risk.
  • Breach of confidentiality: There is a chance your data could be seen by someone who shouldn’t have access to it. We’re minimizing this risk in the following ways:
    • Data is anonymous.
    • We’ll store all electronic data on REDCAP, a secure online survey server, or on a password-protected, encrypted computer when statistical analyses are conducted.

In the unlikely event that you suffer an injury or illness directly related to your participation in this research project, upon your request, Midwestern University will arrange for the provision of treatment for such injury or illness at the closest medical facility. Payment for such treatment will be your responsibility, although your commercial insurance carrier if any, may pay all or part of the medical expenses that you might incur. Midwestern University will not pay any monetary compensation for research related injury or illness or pay for treatment outside any MWU-affiliated Hospitals or Medical Centers. You are not waiving any of your legal rights by volunteering to participate in this study.

Although you will not benefit directly from participating in this study, you will make a major contribution to the information known about gynecologically related concerns impact in hypermobility. In future, others may benefit because doctors will learn about how hypermobility affects gynecological functioning.

You will not be compensated for participation.

This questionnaire should take no more than 15 minutes to complete.

We will not collect any identifying information for the research.

Where will data be stored?
On the servers for the online survey software, REDCAP.

How long will it be kept?
For the duration of the research project (estimated < 1 year).

Who can see my data?

  • We (the researchers) will have access to de-identified (no names, birthdate, address, etc.) information. This is so we can analyze the data and conduct the study.
  • We may share our findings in publications or presentations. If we do, the results will be de-identified.

This study has been reviewed and approved by the Midwestern University Institutional Review Board (AZ #5070). If you have questions about this research project and the research subjects’ rights please contact the principal investigator, Tom B. Virden III, Ph.D., at (623) 572-3868 or email at tvirde@midwestern.edu.

If you have any questions regarding the rights of being a research subject, please call the Office of Research and Sponsored Programs at 623-806-7670 or via email: AZORSP@midwestern.edu.

You can also contact Brona Hagins, MA, at bhagins67@midwestern.edu.

 

After taking this survey, I would suggest listing information on the first page in the last question about if you’re not currently experiencing sexual function issues but have in the past. There isn’t another spot to list that information later on.

 

To participate, click here.

‘Sexual RAlationships’ Facebook Live with NRAS UK, Sept 15

Has rheumatoid arthritis negatively impacted your relationships, intimacy, or sex life?

Don’t miss the ‘Sexual RAlationships’ Facebook Live on Wednesday 15 September at 6 pm BST. That’s 1 pm Eastern. You can convert to your time zone here.

Lohani Noor is a psychotherapist and psychosexual therapist. She recently was an expert on BBC Three’s Sex on the Couch. She is also the author of 12 Steps to Sexual Connection, available via Audible.

Be sure to register. You can email questions ahead of time by Sept 10.

The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). You can follow them on FB, IG, and Twitter. Make sure to check out their website as well!

You can view the recording below:

Ways to Connect with a Long-Distance Partner During the Pandemic

post title against a white paper, red drawn, and pencil

2020 has been a painful year for most of us, from the pandemic to an economic collapse to racism and state violence. Many of us struggle in public, scared of catching COVID-19. I avoided going out at all for a few months. When I finally had to run into a store for something, my PTSD skills kicked in. I don’t know if they’ve ever calmed down, especially with Wisconsin now at number 2 in the nation for infections.

Yeah, I might’ve picked a weird time to go into public health.

We’re struggling in private, too, from panic attacks over ongoing isolation to existential crises to problems within our relationships. Those of us living with partners likely feel like we’ve had enough of them at times, despite how much we love them. For those of us dating someone who lives in another state, there’s a question around if and when it’ll be safe to see our partners again. With infection numbers ramping up again, it’s easy to feel hopeless about being with our loved ones again.

It’s hard. Relationships need connection. For many of us, that connection requires emotional availability, time together, touch, etc. – all things that are difficult right now.

So, how can we better cultivate our connection with a long-distance partner? My newest partner and I explore some ways that can help.

First, some don’ts. Don’t:
  • Listen to or follow every list you see. This one is kinda gross, focusing on toxic monogamy and some other BS I really wouldn’t recommend.
  • Forget to talk with your partner(s) about these measures before just deciding you’re going to do them.
  • Try to force something to work if it doesn’t fit into your relationship/dynamic.
  • Forget to check-in and ask for consent, especially for anything related to sexy things.
This is a great time for general relationship upkeep, like:

Talk about how often you’d like to connect.

This can be different for every partnership, especially if there are differences in time zone or schedule. The distance may make this difficult, so it’s important to be flexible and compromise.

Address issues as they come up.

Leaving issues or things that bug you out there before addressing them can make the situation worse. It’s important to keep a clear line of communication and get on the same page around expectations.

One thing I always try to recommend is having a night every week (or on a workable schedule for you) that allows people to check-in in a mostly-sober space about what’s going well, any issues that have come up, feedback, etc.

Mix it up.

It’s tempting to ask things like how your partner’s day was. Think about other questions or ways to change up the questions you ask.

Share the reasons you appreciate each other.

The pandemic is really doing a number on mental health especially. We could all use a reminder that we matter to someone.

Reconnect on things you might’ve touched on, but not recently.

This could include things like your yes/no/maybe list, soft and hard limits, boundaries, and more.

Look for new ways to connect!

Shared experiences are the backbone of the relationships. It’s more important than ever to cultivate our connection with partners. Set up date nights and really take time together. Here are a few ways that you can do this that you may not have thought of.

Build music playlists together.

Maybe it’s for a time you get to see each other. It could be just to have a shared connection working from home or going through daily tasks, too. Building playlists together lets people share memories, talk about preferences, and connect in ways that few things do. Many music streaming services like Spotify now have collaborative playlists, making this a lot easier than it used to be.

Watch shows and/or movies together.

I always love a date night where couples cook together, sit down, and watch a show or movie together. That’s a part of a relationship that isn’t necessarily there when you’re long-distance. Thankfully, there are tons of ways we can recreate some aspects of that experience.

There are a number of apps that bring options to watch things at the same time, such as Discord, Plex, and Netflix. Apps or plug-ins like Synaptop and Kast can help, too.

You might not be able to sit down and watch something at the same time, and that’s okay. Figure out a time when you will both have been able to finish the episode or movie. Sit down and discuss your reactions and thoughts.

Play games together.

No, I’m not talking about Truth or Dare (although that’s an option). There are a ton of options to play games together now, from phone apps to Steam, console games, and several options to play tabletop games online such as Roll20.

Write erotica together.

With how often I talk about my sex life, people tend to be surprised when they hear I struggle with using words during sexual situations. The nice thing is that doesn’t have to stay the case and, honestly, I’m lucky to have partners that are trying to help me deal with that.

I still like whining about it, so don’t tell them I said that.

These can be one-off episodes or long-lasting situations. You can write all the erotica together or switch back and forth for each ‘chapter.’ To make the process extra fun, consider incorporating fantasies or things you know your partner(s) really enjoy.

You could also consider recording it and letting your partner hear erotica read in your voice. Heck, you can even do this with scripts others have written, like those on Gone Wild Audio.

Send each other voice messages throughout the day.

One of the things a lot of us are missing being able to socialize. Sending each other voice messages throughout the day can help remind us that we’re more than our jobs and the lives we have within our homes. It’s also just nice to hear a voice that isn’t in a work meeting or on another freaking webinar.

Take more pictures and videos.

Along with our struggle around socialization, it can be really comforting to actually see our partners. These pictures or videos don’t have to be sexy, although that can be fun. Just ensure that you have consent before sending sexy things.

Talk on the phone.

I generally detest phone calls, but I have really been missing interacting with key people in my life. When I’m on the phone with Sir, it feels like the miles between us melt away. Instead of worrying about time zones or obligations, we’re both in the same place, even if it’s just our voices.

Have video calls!

Look, I know Zoom Fatigue is all the rage to talk about. In the disability community, we’ve been relying on Zoom and other video call platforms for ages, though, and it’s a lot different for most of us.

It’s also a lot different to talk to a lover on video than sitting in a work meeting.

There are, of course, more niche technological things that allow for connection, including:

I don’t really have experience with these, so I’d suggest doing a good amount of research before investing in these costly things.

Send snail mail.

This is something that I do with a few of my close friends. With all of the digital stuff, it’s nice to have a tangible reminder that someone cares about you. From care packages to simple notes, it’s a really sweet thing to receive or to send off. Cute ‘just because’ gifts are always precious.

Consider sweet things, like writing a series of letters labeled ‘open when ___’ (e.g., when you’re having a rough day).

Read a book together.

Reading together is something I think is so intimate. Combine this with reading out loud to each other on a call, etc., and it can be a really enjoyable way to listen to your partner’s voice. Plus, you can trade off on who picks out the title, meaning you’re learning more about your partner and their likes than you might realize right away.

You can also read books one at a time and send them off to your partner. It’s fun to write cute notes in the margins – and a good excuse to send other tangible things!

Give each other little tasks.

Even without power exchange, completing tasks can bring a sense of fulfillment. These can be loving, fun, or sexy. If you know that, say, your partner struggles with putting away laundry, you can encourage them with rewards – or even punishments if they don’t complete the task.

Consider making plans for when you’ll get to see each other.

Right now, we need things to look forward to. It’s been a really hard year and most of us don’t know when we’re going to be able to see or visit many people we care about.

One thing that has given me a lot of joy has been planning a secluded getaway with Sir where COVID-19 can be the last thing on both of our minds. I don’t have to think about it for work or personally, and neither do they. Being in a spot where we’re not going to be able to really use our phones forces us to unplug. Thankfully, I think we both could really use that.

Lastly? Keep communicating, even when it feels awkward.

Look, communicating effectively can be really awkward. You might feel like you’re asking questions that seem silly or like things you should already know. It gets easier the more you continue to communicate. Thankfully, awkwardness is usually pretty endearing, too!

A Relationship Update

In the last few weeks, everything in my life got put on hold. I owe everyone an explanation.

In 2007, I met my husband. We were engaged in 2012, and then we got married in 2014. Within a few years, I discovered my queerness and gender fluidity. If I’m honest, I thought that once we got through that period, we would be golden.

I was wrong.

T and I are uh… not quite getting a divorce, but that’s for now. It’ll be an inevitability as we’re moving to being friends.

I have a lot of love for him. But I have realized that I’m not *in* love with him… He’s realized the same with me, too.

We’re still living together, but will reevaluate when our lease is up early next year – or sooner if we need to.

As sad as I am about it, part of it is him struggling with my queerness and gender. I would rather feel seen in full than in part, but it is what it is.

We’ve been polyamorous for a little bit, but he only recently began dating. For those of you who don’t know what that means, it means I’ve been on dates and relatively recently more seriously dating. Polyamory is about many loves, and I’m happy to answer more questions about that. I haven’t been as out about it to avoid awkwardness with family, but have reached a point where I’m past that.

This weekend was a weekend away and I think we needed that space to process things. I went to my first Pride (!) this weekend with one of my partners. It was awesome, and they really helped me process a lot of things.

I also had a lot of great sex which is always helpful.

My hope is that, within a few weeks, things will find a new stride that brings back the podcast and the chat. Naturally, I will try to keep people in the loop.

I’m really grateful that I have so many wonderful people in my life like them. I appreciate each and every one of you.

Strong Can Go Wrong, Especially in Chronic Illness

I often feel like a walking oxymoron. I teach people about communication, yet don’t always do a great job communicating effectively. Even though I talk about improving relationships, I tend to avoid working on my own. Perhaps one of the biggest issues, though, is that despite living in chronic pain for the vast majority of my life, I struggle to tell people about my pain.

Growing up in an abusive home, I quickly learned that I wasn’t expected to be my own person. Instead, I was expected to provide comfort and solace for others. That has affected every single day of my life thus far and, despite all the work I’ve done to grow, will probably be a factor until the day I die. It’s caused fights, even with how much I know I can and should share.

It isn’t just that I struggle to show my weak points to others… although, it’s naturally hard to be that vulnerable with others. For me, though, it runs into the conditioning I grew up with, and that’s a hard series of indoctrinations that’s not easy to move past.

Even though I’ve made a name for myself by sharing things with random strangers on the internet – hi! – I still would rather listen to others than talk. Hell, I literally work for an organization where I problem-solve for fellow disabled and chronically ill people and help them feel heard.

At home, I listen to every noise our guinea pigs make. We completely get each other, and I know when they’re asking for snacks. When they get frustrated or annoyed, I can tell and change things up accordingly.

My husband is… another story.

A decade ago, we sat in his car listening to music. He told me how he wanted to be here for me – to share in the burden of my illnesses. For such a long time, I was used to fighting things alone and that was taking its toll on our relationship.

The problem is that we’re both listeners. When we hurt, we both turn inward and crave isolation over interacting with others. I tend to do this with physical pain or when I’m dealing with a Post-Traumatic Stress episode. I may not always be in the best headspace, but it’s usually something that passes quickly.

TJ’s major depression doesn’t operate like that.

In recent years, he’s been able to start sharing more about what he’s facing. Often, though, I have to pull information out like dentists pull teeth. Each nugget of information sits there waiting for these invisible verbal pliers that, combined with reassuring snuggles, finally get the job done.

Every time his depression gets worse, so does my physical pain. Naturally, I haven’t shared that with him because it would be easy to use that as an excuse to avoid sharing… well, it could be if TJ was married to someone who couldn’t read him well.

When TJ shares things with me freely and openly, it changes the dynamics of our relationship. We stop being two people trying to protect each other by denying what we’re each facing. Instead, like adults, we accept each other’s illnesses and try to help where we can.

If that’s not the best reason to be more forthcoming with our own personal struggles, I don’t know what is.

Make sure to check out Lene’s piece, When Strong Gets In The Way. If you missed our Facebook Live, you can always watch it below:

You Are Not An Island: How To Maintain Relationships With Illness

on left, teal overlay with white text - You Are Not An Island: How To Maintain Relationships With Illness - on right, B&W photo of one person sitting on a high top with another person in close with a hand on the first person's leg

Relationships can be really hard to maintain, especially when health issues are at play. It can feel like our illness is a third partner no one consented to – one that has uncontrolled jealousy and attachment issues.

It’s easy to feel like we have to tackle health issues alone, especially if we had them before entering into a relationship.”This is my burden,” we think, “not theirs.”

When we do that, though, it makes it easy to become overwhelmed. We’ve taken on too much by trying to exist inside of a controlled bubble. At the same time, we try to be superheroes and accomplish everything on our lists.

Communication breaks down as we labor away in the land of denial.

Taking the stance that our health is our problem alone leaves our partners out. They worry about and care for us in incredibly deep ways, and shutting them out leads to a lot of hurt feelings. It also removes their autonomy, too.

We’re so concerned that they’ll reject us that we don’t give them the chance to be with us, wounds and all.

Relationships are about making it through the rough stuff as a team. You can’t pitch, cover the infield, and be in the outfield at the same time.

So, what do we do?

Take a minute today to let your partner(s) know how much you care about them and the support they give. Tell them honestly how you’re feeling and doing. Opening up and sharing those very vulnerable things leads to an unparalleled level of emotional intimacy, trust, and love.

Once we do that, our partners can help us with our health issues – and, chances are, that’s something they’ll give anything to do.

It becomes easier to give feedback when we’re honest about our feelings, too.

Having a scheduled date night can help bring about conversations around feelings and give structure to create a feedback loop. It’s always best to talk about these things without sexual tension, so have conversations about feedback outside of the bedroom. And, you know, while relatively sober. I know it can be hard to share feels honestly, which is why I say relatively.

And, by that, I also mean sober as you define it. If you take opioids or mj for pain but still feel comfortable having big conversations or giving consent, go for it.

There is no shame in needing more help or moving the balance of a partnership from 50/50 to 70/30 with more on your partner’s plate. It’s important to remember all the ways our relationships flux and that things won’t always be even.

It is important to make sure that you and your partner(s) both always feel supported. Support can come from within the relationship or outside of it. People you’re close to – other partners, family, and friends – play pivotal roles in how supported we feel.

Most of all, it’s important to ask for help when you need it. Sometimes when we don’t, we can take frustrations out on loved ones. And it feels really bad for everyone, including you.

I am rubbish at getting support I need. I don’t say I need help until it’s too late. And that places unneeded stress on my intimate relationships as well as close friendships.

In learning how to help others, I’m realizing how far I have to go, too. We all have so much work to do, so much we can strive to work on. Being real and vulnerable means admitting that, even when it’s terrifying.

Maintaining relationships takes work. It’s not going to be easy or all rainbows and smiles. But it is important, and the work pays off.

Maintaining Healthy Relationships Despite Chronic Illness

Growing up in the era of cartoon princesses led a lot of us to believe some misguided things about love. Love wasn’t explained to us as being work, but simply as a feeling. Our ideal partners would show up and lift curses for us, making us whole and ‘normal.’

Not only is that far from reality, it also leaves out those of us with chronic illnesses or disabilities.

Relationships take work. Relationships with chronic illness are like taking on two full-time jobs at once.

Thankfully, there are ways to make relationships go more smoothly.

Read more at Mighty Well

Allowing Ourselves to Feel Our Feelings

A few years ago – when I was still doing talk therapy – I brought T with me a couple of times. I felt like there was tension we needed to talk out, and I was right. It just wasn’t the tension I was expecting.

TW for abuse, shitty parenting, emotional incest, self-harm

dark blue background with teal bubbles and white text: Allowing Ourselves to Feel Our Feelings - and teal text: Chronic Sex; on right, photo of a white person covering their mouth

Growing up, I’ve always been that person who tries to cheer everyone up. It’s a habit that developed early in life. Living between two combative abusers, I learned very quickly that they were less likely to cause harm if they were happy. Naturally, then, anytime they were sad or upset, I would do my darnedest to cheer them up.

It’s a large part of why I’m such a sticker around rules, too. If rules are followed, rule-makers don’t harm us, right? (Of course, the political activist in me shudders at that sentence and wants to vomit, but it is what it is I guess?)

Of course, that also meant hiding a lot of my own feelings for the ‘benefit’ of others. For a long time, I had two moods – happy and brooding. When I was happy, I would dance to the latest radio pop and hip-hop songs. When I wasn’t, I listened to a lot of Linkin Park and the beginnings of screamo.

It’s hard to find healthy coping mechanisms in a space full of harm. When I got out and away from my family, I still had to deal with a lot of abuse. It wasn’t until four years ago when I cut contact with my mother that I actually was able to start healing.

The euphoria of that separation, of cutting off codependency and emotional incest, combined with getting married was something I was able to ride for a long time. As they always do, though, that high wore off. I began to realize that I wasn’t as healed as I thought. That’s when I started therapy which helped for a little while.

Continue reading “Allowing Ourselves to Feel Our Feelings”

Pick Up Women’s Health This Month!

If you take a look at the latest copy of Women’s Health magazine, you’ll see a familiar face around page 156.

two photo collage on a black background; 1-cover of the May 2018 issue of Women's Health with Anna Farris; 2-photo of Kirsten leaning on Theron’s shoulder in the magazine

T and I are in the magazine talking about how we make love work with depression and other mental illness. Our blurb is small, but it means so much to me.

Sometimes we forget the impact we have on others just by sharing our own stories. This was a much-needed reminder to keep telling my truth.

I picked up a couple extra copies, so let me know if you want one and I’ll be happy to send it out.