Category: chronic sex

Young Rheumatology Patients Not Counseled on Sexual Health

Young Rheumatology Patients Not Counseled on Sexual Health

Posted on by Grayson

Brittany M. Huynh, MD, MPH, presented an abstract at ACR Convergence of her paper, Adolescent and Young Adult Rheumatology Patient Reports of Reproductive Health Screening and Counseling in the Clinical Setting.

In this paper, Huynh and her colleagues found that only 38% of pediatric rheumatologists were screening patients between 14-23 years of age for sexual activity. Only 17% of patients surveyed had conversations with their rheumy about pregnancy prevention.

Thankfully, this number was higher for the 36% of surveyed patients that were on teratogenic drugs — those that would harm a fetus. 54% of these patients were screened for sexual activity and 44% were counseled on avoiding pregnancy. However, only 62% of these patients knew their medications would harm a fetus.

We already know that there’s a general lack of these conversations happening across healthcare. Many healthcare providers don’t feel like they know enough about this topic to talk to their patients. Others may struggle with getting their pediatric patient alone to have these conversations without a parent or caregiver present.

As a sex educator, I also wonder how many of these conversations were affected by the overturn of Roe v. Wade. Many clinic systems and professional organizations have struggled with how to highlight the importance of this issue. That’s especially true in states banning similar conversations or punishing healthcare providers for having them.

For any rheumatology professionals looking into how to have these conversations, consider reaching out! I’m always happy to talk shop, consult, or work with your clinic on how to best serve this population.

Photo from The Gender Spectrum // VICE

New Post on Healthline

Posted on by Grayson
I’ve been writing a few pieces for Healthline like a real writer and getting paid and all that? What?
Surprise!
I’m writing about health fun, most specifically on relationships, sexuality, sexual health, and all that good stuff. You know my niche.
Check out the new post – In Sickness and in Health: Making Love Last While Living with Chronic Illness. It also features hella cute drawings someone did of T and me!
If you missed my first piece with Healthline, here’s that one too – Let’s Get Intimate: 8 Tips for When Chronic Illness Gets in the Way of Your Sex Life.

 

Study Alert: Chronic Pain and Relationships

Posted on by Grayson
You have the opportunity to help researchers at the University of New Brunswick conducting a study understand how chronic pain conditions interfere with relationships!
This study is designed to help understand how pain/health issues affect people’s views of themselves as eligible, valuable romantic partners, as some of UNB’s ongoing research suggests people beliefs about their worth as a potential partner is used as a reason to defer dating/staying single despite a desire for a partner. They think it’s possible CP contributes to feelings of shame, perceptions of low self-esteem and relationship competency, and low satisfaction in relationships via pain’s contributions to physical limitations and mental health symptoms (i.e., depression, anxiety).
If you are Canadian and at least 18 years old, or American and at least 21 years old, you are eligible to participate. Since the questionnaires can be done online, the study is open to all consenting adults.
In the questionnaires, you will be asked for a little bit of information about you (e.g., age, gender), any persistent health conditions you may experience, your relationships, and your feelings about yourself. It will take 30- 45 minutes to complete the questionnaires. Participation is voluntary and all information you choose to share will be kept confidential. All participants will be entered into a drawing to receive a $10 honorarium (i.e., a gift card) for their time.
If you are interested in learning more about the study please go to the study website at https://survey.psyc.unb.ca/HealthAndRelationships.aspx or contact Lyndsay Crump (doctoral student in clinical psychology), Rehabilitation Psychology Research Laboratory (University of New Brunswick) at rehablabUNB@gmail.com.
Please note that getting more information about this study does not obligate you to participate. This project has received ethics approval from the University of New Brunswick (REB 2015-120).

 

Recapping Milwaukee SHARE HCP

Posted on by Grayson
Last week, I was honored to be able to attend some of the Milwaukee SHARE sessions. If you’re unfamiliar with SHARE, it stands for Sexual Health and Relationship Education. It is run by Tool Shed Toys, one of the most progressive and educational sex shops in the nation.
If you want to learn more about my visit there, please click here to head over to my post on Chronic Sex.

 

Hiding

Posted on by Grayson

Identify one experience from your childhood that taught you to hide your true self – some event that led you to believe that hiding was safest. As you go about your day, recognize when you’re acting on this belief, and remind yourself, I am not that child anymore, and this belief no longer serves me, since it holds me back in life.

Yikes. I wish I didn’t have so many events to choose from.
When I was in high school, I came to terms with something I’d already known to be true for quite a while – that I am attracted to all genders. At that point, I considered myself bisexual but I’m likely more in line with pansexuality based on this definition:
Courtesy of Queer Babble
It was great for me to be able to embrace that side of myself, even though I wasn’t able to really do so publically. A few of my close friends knew but that was about it.
All my friends at the time openly embraced and lobbied for same-sex marriage and other related rights. Living in a very Tea Party-esque household, I couldn’t, no matter how much I wanted to.
One day there was a rally and we drove by it on the way home from school. My mother was livid to see my boyfriend at the time as well as all my friends there. I got a thorough lecture about how civil unions should be enough for ‘gay people’ who didn’t need to shove their sexuality in everyone’s faces.
There’s so much wrong there.
It took me until I was in college and others sharing their own struggles with me for me to be upfront about it.
I grew up hearing, again and again, the same things about sexuality being pushed in people’s faces and how it was fine to be different like that… but not in front of others, not in movies, not in shows. You could be yourself as long as you did it in secret where no one could possibly see you.
What kind of message is that to send to any child?
I opened up about my sexuality as well as my sexual abuse at the hands of another child when we were young at the same time. My mother’s response was that the abuse must have confused me. Besides, I was dating T at the time, so I couldn’t like everyone unless I was a super slut.
I wish I was kidding.
I know now that degrading myself for my sexuality and feelings serves no purpose, other than to replicate my mother’s words in her absence. I refuse to do that to myself.

 

Get Freaky Friday: Sexy Talk with the Belchers

Posted on by Grayson
Ah, Valentine’s weekend. It’s that special time where we all fund those giant corporations in order to show appreciation with chocolates and flowers once a year that we could show every day with kind words.
Courtesy of The Simpsons
Hooray capitalism!
Anyhow, let’s talk some sex for the big weekend, eh?
The boring definition is that sex is different for many people and a singular definition can’t really be pinned down.
The less boring definition is that it can be many things including the following: oral sex, anal sex, vaginal intercourse, scissoring, and manual sex/masturbation. This definition can change for each individual, especially those of us with disabilities. Some people with spinal cord injuries receive pleasure in certain non-traditionally sexual spots like their knee because that’s a spot where they may have some feeling.
One quick word? You’re probably going to learn a lot about me today.
Sorry fam.
Most people have their first sexual experience as some form of self-pleasure which can even happen in the womb.
Just don’t think about jerking it in your mom.
Ew.
Let’s get some anatomy down. First, please note that this is not meant to be an exhaustive post. While I aim to be inclusive, I know that using phrases from Bob’s Burgers like ‘lady parts’ and the like could make it not feel like that. I am also writing this from a very sex-positive, feminist viewpoint.
Now that we’ve got THAT out of the way…
A lot of sexualized parts are lady parts.
Yay, patriarchy!
Anyway…
We have boobs which I assume everyone is familiar with.
We have butts.
And we have vaginas.
It’s actually a LOT more complicated than that.
The vagina is something we are hopefully all somewhat familiar with, but if you’re not click here for an anatomical drawing.
We’re led to believe that vaginas are where it’s at. Porn and other depictions of sex tell us that women should achieve orgasm via vaginal penetration.
Guess what?
Only less than ten percent of women normally orgasm from penetration alone. The rest of us enjoy or rely on clitoral stimulation for our orgasms. If you don’t believe me, check out most vibrators. Ones like this one are generally made to ‘attack’ the clit, not for penetration.
Penises are funky. As a wife and a momma to three boy guinea pigs, I see enough on a regular basis to know.
Also, yes, you can fracture the penis. Please be careful.
Anal sex can be enjoyable no matter your sexual orientation.
The best advice I can give is to use plenty of lube (and then even more!) and to speak up if anything isn’t comfortable.
If it doesn’t feel great, that probably means some parts are going to hurt worse than they should.
Also, towels are your friend.
Also also, maybe use some toys to get used to/try out the sensation first.
Toys can be pretty awesome.
For people with limited mobility or certain conditions (Sjogren’s for example), toys and sex furniture can be a great way to either get wet/hard or to experience an orgasm without having to experience too much in the way to discomfort.
Toys can also be a great way to experience self-pleasure, especially if you have any issues with orgasms due to medications or other reasons.
Please make sure to read directions on any toys you may get, however, as certain types of lubes aren’t compatible with certain toy materials. If you want to play it safe, water-based lubes are much more likely to be better for your body and your toys. I recommend Almost Naked from Good Clean Love.
Also pick up a cleaning solution for your toys. They can get really germy, especially certain materials, and lead to infections.
When in doubt, try to visit a sex-positive sex shop like The Tool Shed in Milwaukee, Wisconsin.
I promise we’ll explore more of these details as time goes on!
Happy Valentines Day! Go get you some!

 

What #ChronicSex has taught me

Posted on by Grayson
Self-love, self-care, relationships, and sex or sexuality all tend to fall to the backburner when patients are living with illness. The issue with that is that chronic illness lasts a lifetime. I have been ill since I was five-years-old. I cannot be expected to be non-sexual all my days.

It’s just not going to happen.

Especially when I clean up so good

So, why aren’t we discussing these topics in the chronic illness community more often?

At Medicine X in September, there was a panel on relationships and intimacy with illness. It was brought up that those with chronic illness wished that physicians would bring up Quality of Life (QOL) issues more often. Roni Zieger pointed out during a Q&A session that 1) physicians are not taught how to help with these things, and, 2) that physicians themselves may be facing difficulties in these areas due to many factors.

Working for a group of pediatricians, I can certainly see validity especially in the last point. I watch the physicians I work with work sometimes 15 hour days a few times a week between clinical and administrative work. It’s amazing.

Sex especially is a taboo topic. Those of us living with disabilities are often infantilized by those around us, or it’s assumed that we don’t want/need sex. I am sure that part of that has to do with the fact that very few of us bring up these issues ourselves, save myself, Mariah Leach, and a few others.

It’s all so wrong.

My answer to this was to start a chat that runs Thursday nights from 7-9 pm ET on Twitter – #ChronicSex. We discuss topics from mindfulness and activities for building self-love to masturbation to dealing with the caregiver/caregivee dynamic in a relationship to full-on getting it on as we discussed last week.

In the few weeks since the chat started, I have learned a lot about others and myself.

One thing I already knew from my experiences as a sex-positive feminist and chronically ill women was that partners may not initiate sex because they’re worried about our pain levels. Our medications also affect our sex lives, whether they directly impact libido or cause issues like vaginal dryness or extreme fatigue and nausea.

I’d rather not vomit on my husband.

As a society, we don’t discuss pleasure in regards to women often either, whether that’s masturbation or sex. When you consider that the majority of people with certain chronic illnesses are female, this is really bad.

On a more emotional level, our partners can be quite dismayed about our illnesses. They mourn what our lives may have been in the past and feel both downtrodden and helpless because they can’t solve our pain.

Those of us with illnesses also tend to focus on how inadequate we are. It’s put in our face in many ways, even when we see pharmaceutical ads for medications that failed us.

Perhaps what I’ve learned the most during the weeks this chat has gone on is how much our ability to be in a relationship affects our self-worth. As a younger woman, I felt the need to be in a relationship or I wasn’t complete. Now that I’m married, it’s easy for me to say that I wouldn’t necessarily need one because I’m not in that position. The reality is that 1) my husband is my main form of support, and, 2) society tells us we grow up to have a family and provide for them. If going on dates is difficult due to our illnesses, this part of our lives is incomplete, leaving us feeling like bigger failures than before.

This can be especially true if we’ve had a relationship end due to illness as well.

And then we crave intimacy. Sex is a basic human need and without it, many struggle.

I’ve also learned a lot about myself.

Talking about sex and sexuality has been a passion of mine since high school. I volunteered with Planned Parenthood, helped get people educated about sex, and was always that person who had condoms to hand out just in case.

This chat has renewed my passion for health advocacy in a way I wasn’t sure was possible.

It’s also opened a door for the open discussion of sex, relationships, and other Quality of Life issues not commonly talked about. These issues heavily impact our lives and yet we stay silent because it isn’t proper to discuss these things or we’re damaged and should be happy that we’re in a relationship at all.

I hope that, in openly talking about these issues, we can do more as patients to help each other and be able to explain issues to physicians and others more clearly.

(originally posted on the ePharma site on 2/9/2016)

 

Self-Compassion

Posted on by Grayson

Whenever you get hard on yourself today, comfort yourself with a physical gesture and a few words of compassion, such as, “I’m having a tough time, but I deserve my own love and kindness.” According to self-compassion researcher Kristin Neff, physical touch releases the feel-good hormone oxytocin – even when the touch is your own.

Today’s Tiny Buddha Challenge is an interesting one. I often find myself rubbing parts of my body like my neck/collarbones or hips when I’m not well and am in need of comfort or a pick-me-up. I had not put together, though, how this might relate to oxytocin, the chemical of love.

What do you usually do when you start getting hard on yourself? How does this keep you stuck?

Lately, I have been much better on this as I’ve been working on self-love and self-care as a part of the #ChronicSex movement. However, that doesn’t mean this is perfect or that I talk to myself like a champ all the time.
Over the weekend, I had a hard day at my swimming class. As I was in the bathroom at home after the class, I reflected on how stupid it was for me to try to take a class at the same time one day a week for two and a half months without considering my fatigue and pain levels would get in the way – or how my fibro and other issues would be exacerbated.
It was bad.
I had to take a step back… figuratively, obviously, because the toilet was in the way… and take a breath.
That negative self-talk has been ingrained in all of us for various reasons – family/childhood issues, the media, etc.
Recognizing it when it happens is the first step to stopping it because you know what’s going on.
It happened to be my sister’s birthday so, since I always bring my phone in the bathroom thanks to IBS, I texted her to tell her that I loved her bunches.
Stepping back, I know that I did this as a way of making things up to myself for having been harsh as I often utilize my sister as a way to treat myself better. I’ll think, “Is this something I would say to Kelsey?” If it’s not, then I know the situation has turned too negative.

What, if anything, do you fear might happen if you’re not hard on yourself? Is is possible that’s not true?

This is a really good question for us all to examine.
Sometimes, I know that it may seem like we won’t achieve as much without pushing our own buttons, without being horrible to egg ourselves on.
We can do so much more without that.

What type of physical gesture do you find most soothing?

A rubbing/scratching in the area between my chest and my neck. It can be erotically pleasing or just comforting.
What about you? I’d love to hear your answers for these questions!

 

Get Freaky Friday: Link Roundup

Posted on by Grayson

Sex has long been a taboo topic to really discuss in the United States. I’ve been talking about this disparity between how the United States and other countries address sex & sexuality since I was in high school… so over a decade.

Gross.

The younger generation of Americans is ready to discuss sex. We’re ready to talk masturbation and females enjoying sex – or why they may not enjoy it or have a libido. We’re ready to stop being defined as someone’s partner or ‘extensions of male fantasy‘ and start to be seen as ourselves

We’re ready to make jokes about sex that may seem too real. We need to learn about our bodies and how they react sexually instead of being forced into abstinence-only education that does nothing good for pregnancy and sexually transmitted infection rates. We’re ready to say ‘vaginal atrophy‘ aloud sans giggling at the word vagina. We’re ready to question why there are ads to fulfill those male fantasies but not to truly help women.

Speaking of interactions with others… There are a lot of ways that chronic illnesses can affect our relationships and intimacy, but fatigue is a huge sticking point. If you’re together when that illness hits, it can be quite hard to keep things together throughout the changes. This means that some of us live in a relationship without sex. There’s nothing inherently wrong with that unless each person isn’t on the same page – and that can change.

Sometimes it’s more our depression and ways of coping that affect our relationships more than our primary illnesses.

Ther are many things that can affect our relationship dynamic like the need to discuss our illnesses. How much do we share? Are we complaining to or burdening our loved ones?

Therapists are great to utilize, whether together or alone. Sometimes marriage or couple’s therapy is a great way to visit these issues in a safe place.

Also, sex toys can really help. If you’re interested in exploring some of the bestselling sex toys, check out this collection of reviews.

Don’t forget to join us for #chronicsex chats over on Twitter every Thursday from 7-9 pm Eastern Time!

 

Get Freaky Friday: Relationship advice from religion & bingo fuel

Posted on by Grayson

I’m not generally one to post a lot of religious information, mostly because I’m really not religious. I follow a Buddhist personality, but that’s about it.

However, my husband and I found this article on the Jehovah’s Witnesses website a couple of weeks ago about when a spouse has a chronic illness. Some of the language is ableist in nature I think. Obviously, there is also a little more religion than I would personally love to see, but what can you expect?

Here are some of the main points, though, that I found pertinent to our ongoing discussion of self-love, self-care, relationships, sex, and sexuality with chronic illness:

MARRIAGE can be a challenge, but when one mate becomes chronically ill while the other remains healthy, complications can multiply. * Are you caring for an infirm mate? If so, do any of the following questions worry you: ‘How will I cope if my mate’s health declines even further? How long can I continue to take care of my mate and also do all the cooking, cleaning, and secular work? Why do I feel guilty for being the healthy one?’
On the other hand, if you are the ailing spouse, you might wonder: ‘How can I respect myself when I’m unable to carry my load of responsibility? Does my mate resent me for being sick? Is our happiness as a couple over?’

Sadly, some marriages have not survived the strain caused by a chronic illness. Yet, this does not mean that your marriage is doomed to failure.

Many couples survive and even thrive despite the presence of a chronic ailment. Consider, for example, Yoshiaki and Kazuko. A spinal injury rendered Yoshiaki unable to make even the slightest movement without assistance. Kazuko explains: “My husband needs assistance with everything. As a result of caring for him, my neck, shoulders, and arms ache, and I am an outpatient at an orthopedic hospital. I often feel that caregiving is overwhelming.” Despite the difficulties, however, Kazuko says: “Our bond as a couple has become stronger.”

…

Rather than assume that you know the best way to show consideration for your spouse, why not ask him or her what would be most appreciated? Nancy, mentioned at the outset, eventually told her husband how she was affected by not knowing the family’s financial status. Now her husband endeavors to be more communicative in this regard.

TRY THIS: List ways that you feel your mate can make your present situation a little easier, and have your spouse do the same. Then switch lists. Each of you should select one or two suggestions that can realistically be implemented.
…

Together you might take regular breaks from serious medical concerns. Can you still enjoy some of the things you shared before illness struck? If not, what new activities can you try? It could be something as simple as reading to each other or as challenging as learning a new language. Having a life together outside the illness will strengthen your “one flesh” bond—and increase your happiness.
…

TRY THIS: List on paper the obstacles you face in taking care of your mate. Then make a list of steps you might take to overcome these or to cope with them more effectively. Instead of overanalyzing them, ask yourself, ‘What is the simplest, most obvious way to improve the situation?’

I’ll admit that their use of the word ‘mate’ is odd. I get why they chose that, though.

It’s important during our relationships that we all take care of ourselves, whether you’re monogamous, polyamorous, asexual, or a cis-gendered heterosexual white dude. Self-care and self-love are integral to how we interact with each other. These things color our relationships, how we communicate and interact with others.

I used to get really grumpy when I was hurting. I mean, I still do, but it’s different you know? I used to get incredibly combative and would brood.

Taking my emotions out on others – T, my sister, etc – did not lessen my pain. It did make me feel more like I deserved the pain, however.

It took me a while to realize how this affected my relationships. It took even longer to try to correct that.

The Spoon Theory has really helped. T and I have some code words we use as well, like Bingo Fuel. Bingo Fuel is simply the point where you’ve run out of enough fuel that you must turn back to ensure that you can get to base. T and I use this when we hike or snowshoe so that we can keep track of my energy/pain levels when we’re being active.

That still depends on me to evaluate constantly and communicate that need… which doesn’t always mean that I do this. The idea is a good one, though.

What about you? What are ways you’ve utilized to communicate illness issues better?