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Transcription:

This is Kirsten Schultz and I’m going to be doing a little bit of a preview of our podcast coming up here, called Chronic Sex. The first thing I want to do is kind of discuss why we’re calling the podcast – and the whole movement we’re working on – Chronic Sex. Really what we’re looking to do, and what this whole movement embodies, is starting conversation about how our chronic illnesses and disabilities affect our ability to love and take care of ourselves, which in turn affects our relationships with other people, including all the way up to our sexuality, whether or not we feel sexy, and the acts included under the umbrella of sexual activity themselves.

It’s very hard to engage in sexual activity if you don’t feel like you’re worth getting pleasure, if you don’t feel like you’re worth somebody else maybe putting in effort because you’re in pain and can’t do certain things, and the name Chronic Sex just really came about as I was looking for a term that hadn’t been used before, that wasn’t being used in other realms, and one that was short enough that we could use it as a hashtag for our weekly chats that we have on Thursday nights at 7pm Eastern Time.

 

Starting soon here, I’m hoping to have an additional chat, hopefully earlier in the day, so that we can be a little more inclusive of those living around the world, just because 7pm Eastern Time is pretty much when everyone else in the world is asleep. So I’m looking to expand to two chats here, so that we can get some more activity from people in the UK who have really been excited about the movement, have been participating when they’re up late with painsomnia, but haven’t been able to necessarily participate on a regular basis just because of the timing.

So what we’re going to do with this podcast, is we’re going to do, I think, a bi-weekly podcast, so every two weeks we’ll release an episode, and we’re going to alternate what the focus is for each episode. So for the first week, what we’ll do is myself and Kristin Coppens – who will be working on this podcast with me, I’m very excited to say! – one week we’ll do more of a conversation about general chronic illness things. This may include news that’s come up, hot topics, things like that. And that will kind of bour “Chronic Ks” segment of the podcast.

The next episode that’s released, then, will be specifically about chronic sex related topics, so things about self-care, self-love, self-worth, how we can be compassionate to ourselves, issues that our illnesses may cause in our relationships, whether that’s an intimate relationship with a partner or a casual dating relationship, or even a relationship with family and friends, or at work, as Kristin and I have unfortunately both dealt with. And we’ll also touch on how our illnesses affect our sexuality, and again, obviously, sex: different things that we have to be mindful of, how sometimes with pain we might not be able to be as spontaneous as we like, all those fun topics!

I realized I haven’t introduced myself. Hopefully you know me already, but I’m Kirsten Schultz; I’ve been “collecting” chronic illnesses since I was five years old. The first one we added was asthma, which is pretty mild and intermittent; it tends to be worse during cold weather or if I’m participating in certain activities. The biggie, though, was my systemic idiopathic juvenile arthritis, or Still’s disease, and that required going through a whole host of misdiagnoses to get to that point. I grew up without medical care, unfortunately, and in a very difficult household, and by the time I hit high school I was very interested in how, as a society, we approach the topics of sex and sexuality. Now at that time, the Paris Hilton / Carls Junior / Hardee’s cheeseburger ad had come out, where she’s in this tankini thing, with… eating this juicy hamburger on top of this car. So… conversations about that on the one hand, versus the abstinence only education that was put in place on a federal level during that time period. And I actually did end up writing my senior thesis in high school, as a part of my International Baccalaureate diploma, on that juxtaposition: pushing sex as a society – because sex sells – but not educating people on sex and sexuality, and how to keep themselves and each other safe.

When I was in college, I met my husband and started to blog as a way to show him what I was dealing with and as a way, for myself, to learn about my illnesses. As a part of how I grew up, I did not have the best emotional education, and really was having a tough time coming to grips with discussing with him the possible complications related to my illness. And I found that writing took the immediate emotion out of it. I might cry, when I write, but I don’t have to cry in front of him. [Chuckles wryly.] I don’t like crying. I mean I’m used to it more now, but we’re talking nine years ago, so…

And a couple of years after that, I had kind of moved away from the general blog that I was writing, that included a lot of my political thoughts at the time – a lot about about the Israeli-Palestinian conflict, and things that I was studying as a religious studies major with a history and politics minor – and had really focused on writing about my health. And so my husband – who I will refer to as “T” both on my personal blog and Not Standing Still’s Disease and elsewhere – said to me, “Hey, I think really you should just write about your health. Let’s start this other blog, and here’s this great name for it, and let’s do it!” I mulled it over for a few days before kind of jumping right into it.

So I’ve been writing with Not Standing Still’s Disease for seven years now! In the last seven years, I have had the chance to meet and be a part of the lives of some amazing people dealing with chronic illness, and part of how Chronic Sex came about is that again and again I was hearing people talking about how their illnesses were affecting their relationships, and how their illnesses made them feel “lesser.” And there is a TON of ableism in the world, and it’s very easy to internalize that ableism and to get into a kind of downward spiral of thinking about how horrible you are, how horrible the parts of your body that aren’t working correctly are, and really kind of go into a depression from that.

I’ve struggled with depression for the vast majority of my life. I think the first time that I considered looking at ending my life I was seven years old, so… it’s been a while. And that’s something that goes hand-in-hand with chronic illnesses very often, just as a result of the nature of what we have to deal with, and what we have to face with our illnesses.

So in meeting all of the wonderful people I know and hearing their stories, I realized that there really wasn’t anything out there that was readily available and very public about how our illnesses affect us and how they affect everyone who comes into contact with us and really… everything. I have three guinea pigs – I talk about them often – and they’re my support animals, but they also see a lot more of what I deal with regarding my illnesses than anybody else, just because of the sheer fact that I’m here at home with them, that they comfort me, that they’re always interested in what I’m doing – mostly because they think I have food! – but they’re very loving creatures. So even our pets are affected by our illnesses. These are things that we’re not really talking about on a wide scale; you may have some people in niches discussing, but not so much in one place. There aren’t always all the resources that people are looking for in one place. People don’t know all the statistics on sex and sexuality, whether that involves sexual dysfunction, or just basic facts about sexuality, like: three-quarters of women can’t achieve orgasm by vaginal penetration alone, and need clitoral stimulation. And that’s a fact that many of my lovely chronically ill friends don’t always know, because that sexual education isn’t there. And so then, that adds to the degradation, the internalized ableism that we feel, if we can’t achieve an orgasm through vaginal penetration, it’s all of a sudden, ‘There’s something wrong with me,” “I am just not good at sex,” “I’d better just not ever have sex again,” … those kinds of thoughts that come up.

And that’s a very specific example, but we will definitely do more of those as we go. My other partner-in-crime (aside from Kristin Coppens), who is amazing and I encourage you guys to check out her blog (I’ll put it in the notes here), and next time hopefully you can hear a little bit from her, but my other partner-in-crime is Mariah Leach, and she has been blogging since 2008 at From This Point Forward, and she really works on supporting women with chronic illnesses who are or want to become mothers. That’s her biggest source of passion, as somebody who has had two children now, and she is wonderful in that regard, and regarding sex and sexuality in general… she’s just a wonderful person! So I would highly encourage you to check out her blog, too and again I’ll put those in the notes.

Other people who we will probably be talking to include Lene Anderson, who is another juvenile arthritis patient. She lives in Toronto, Canada, and has been incredibly supportive of Chronic Sex and actually one of the reasons it has gotten started, both due to her covering it for the websites she works for, but also due to how she discusses, very frankly, masturbation when you are disabled. One of my favorite blog posts about sex and sexuality that she’s written involved finding a friend who you could trust to unscrew the bottom of your vibrator to replace the batteries so that you could masturbate effectively on your own. And that was just a really eye-opening thing for me, having been in a relationship for so long, and having somebody around who can open vibrators and jars and [chuckling] all those things we kind of take for granted.

Some other people who are great in talking about some of these issues are the “In Sickness and In Health” podcast; Abby Norman, who writes… there’s a series of posts called, “Ask Me About My Uterus,” that are really centered around menstruation issues, endometriosis issues, and a vast number of other things. She is very vocal about those things, and I’m really excited to share that she has a book coming out soon about some of her own journeys she’s had in life as a patient with endometriosis.

I’m also excited to share that as a result of the work I’ve already done with Chronic Sex over the past year, I will be attending a number of conferences. Mariah and I will be presenting and running a panel on sex and sexuality in relationships for the Arthritis Foundation’s Juvenile Arthritis Conferences this summer. One is in Phoenix, in July, and the other is in Philadelphia in August, and that session is open to the young adults only, so 18 and up, coming in without parents; it’s going to be a very safe space. I’ll also be presenting about Chronic Sex at Stanford University’s MedicineX Conference as a part of their Healthcare Innovations Day, explaining the project to a number of different stakeholders in health care, from physicians to patients to other people involved in the health care system, and I’m really excited about that. Then, later that month (in September), I will be at the Women and Pain conference in Los Angeles, talking about sex and sexuality as someone with chronic pain.

I’m really excited to get started with this podcast, with sharing stories, whether that’s my stories or those of Kristin, Lena, Mariah, and Abby, or… yours, if you would like to reach out, if you would like to share what you have gone through regarding any of these topics, I would love to hear from you. I’ll put my email in the shownotes so that you’ll have easy access to it, and you can definitely know if it’s something that you want to have be completely anonymous, if you want to use your first name, if you’re like me and just don’t care anymore [laughing]… all those things are things we can certainly discuss, and we’re always looking for people to write guest blog posts for our website, which is chronicsex.org. (Don’t go to chronicsex.com, it’s like a weed store, I think, so… “dot org” is all you need to remember, chronicsex.org.) And I will also try – I don’t always do a great job – to post the chat questions we’re going to have every week. I try to put those earlier in the day for our 7pm EST chats on Twitter. We do a graphic, and then we also include the text of the questions as well, in order to be accessible for everyone. We also have, on that website, some quick and easy ways to look at some great resources. There’s a resources section and you can go in and take a look; they’re all kind of categorized, so the first section you’ll see is about self-esteem and body image; and next, self-love and self-care; LGBTQ (I need to add some of the other letters I’ve learned on there, so it will be LGBTQIA+) and gender roles; dating & relationships and talking to your partner. We also have a section that’s for and from partners, in case you and/or your partner or your   family ever want to see more of what other people in relationships with chronically ill and amazing people see and go through. There’s a large section on sexy times with advice from experts. Some of these are broken down by illness, like sex and arthritis, sex and fatigue; others are very broad and can be used in a wide variety of illnesses. We also have a section about masturbation & sex toys; talking to doctors; pregnancy, fertility, and parenting; some general sex ed; links to some sex-positive sex shops, such as Come As You Are in Toronto, which I’m hoping to visit in a couple weeks while I’m up there (so excited!), and the Tool Shed in Milwaukee, Wisconsin, which I love with all my heart – I wish I lived in Milwaukee – but I feel like I’d be there every day annoying them. There are also some products on there under a heading called “Sex Toys and Helpers” that are CS-approved; these are toys, lubes, and various other things that have been used by some of us who appreciate these products who think they work really well for a wide variety of people with illnesses. Obviously the first thing I have on there is lube, because lube is probably the most important thing in the entire sex world (after consent, of course!).

We do also have some links to some other blogs that are about chronic illness in general, as well as chronic-illness-related organizations. Down towards the bottom we do also have lists of some books on illness, on self-care and self-love, or on dating and sex with disability. We do also have a freebies section, which is small right now, but basically consists of things you might want to have as your phone wallpaper, or your wallpaper on your computer(s), things like that. Just to remind you that you’re amazing, or just to brighten your day and show something pretty. So that’s kind of an overview of our website, and overview of what we’re hoping to discuss with this podcast, and kind of the schedule that we’re hoping to keep.

I’m really excited to get this started. I recently quit my job so that I could focus on this a little more, even though there’s not money in it right now. So if you’re interested in supporting us, you can support us on Patreon; I will put that link in the show notes as well. Patreon is a great website where you can donate a certain amount of money every month; the smallest amount I have on there is five dollars, and each step up in pledges gives you a certain kind of reward for what you’re doing. So that lowest amount, that five dollars, will get you… I’ve written an e-book on learning how to love yourself with chronic illness, so that would get you that. And if you pledge ten dollars, you’ll get that as well as being listed as a Hamilton-level supporter on the website. (Those of you who don’t know me so well, I have a big Hamilton problem, so just be prepared for that [laughs]). Anyway, you can donate however much you want a month, I think you can stop it pretty easily, those kinds of things.

I’m trying to think what else to talk to you about today. I don’t there’s a whole lot until I talk with Kristin a little more in a couple of weeks when we’re both in Canada. I’m really excited because we’re both going to be there as a part of something the Self Care Movement. It’s put together by a company called Self Care Catalysts, which is the company that both Kristen and I both met and became aware of in March of this year when we attended the E-Pharma Summit in New York City. The Self Care Movement – their mission is to transform perspectives about chronic illness and the way we manage it, and to celebrate the greatness in ordinary accomplishments that patients face everyday. So really, the whole movement is focused on creating a society, a culture, that is more focused on self care, because we don’t have that right now – far from it! So we are both excited, I know, to be a part of this – I had to go get my passport; this will be my first journey out of the country – and I’m extremely excited because Kristen and I will have a chance to sit down with Lena Anderson, and I know that’s just going to be the best time ever.

So…  I think that wraps it up. If you are interested in kind of following the Self Care Summit that Kristin and I are attending, that is June 27th in Toronto, Canada. You can follow along on Twitter (I’ll post the hashtag in the show notes so you can take a look at that), and I think for right now that’s it. We will probably have a podcast that goes up not too long after this Self Care Movement at the end of June, since Lene, Kristin & I will all be hanging out together, and…yeah, I think that’s probably all for today!

I certainly hope that you are as excited as I am to learn more about how we can love and take care of ourselves to help improve our illnesses, how we jump over those hurdles in our relationships that illnesses cause, and how we can be more expressive and own more of our sex and sexuality despite our chronic illnesses. So that’s it for today, I will talk to you soon, and please join us Thursday nights at 7pm (EST) using the hashtag #ChronicSex.  You can also follow our Twitter account, it’s the official account for the chat, it’s @chronicsexchat. That also happens to be our handle on Instagram, so we’d love to see you on there as well. We also have a Facebook page you can go and like. We do have a very private/secret aka “you cannot find it through searching” Facebook group, so if that’s something you would like to be a part of, please email me and I will get you instructions on how to do so.

I hope you’ve had a fun time listening to our short little – I guess it’s not short, it’s almost half an hour now, sorry! – little podcast with just me, and I’m excited to bring you more content very soon. Have a great day.

Transcription of this episode provided by Shelley Krause (aka @butwait on Twitter), an older white cis queer activist who is choosing to use her temporarily able self in the service of building communities characterized by deep inclusivity and a genuine celebration of difference.