Category: 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

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

Posted on by Grayson

 

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:

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.

 

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)

 

Gettin’ Jiggy With it

Posted on by Grayson

Warning: This post is about sex. Well, sex and intimacy and RA and love. But mostly sex. That being said, links will most likely include at least text about sex, if not pictures or (gasp!) naked people. But no naked me. Sorry you guys. Read on at your own risk!

Not many people are willing to talk about sex with a chronic illness. It already feels like we are sharing so much of ourselves, allowing people to look in on our pain. I can imagine that others felt like I did until recently – that sex is an intimate thing not to be shared with the outside world. While I tend to agree still, I think that someone has got to start talking about sex and RA. People need to understand just how much this disease can take away from us. It’s not just about dignity or being able to go to the store or the bathroom alone – it’s about a disease affecting everything you do and trying to steal your intimacy and who you are.

I’m not going to let it.

Yes, I ran this post by my boyfriend. He doesn’t agree with the flattering bits, but oh well 🙂

I won’t put anything too personal about him up. I don’t need all y’all trying to steal him from me!

I dated throughout high school and college. I had one or two semi-serious relationships that ended, coincidentally, when my disease was flaring up. It wasn’t until I met my current boyfriend, though, that I really had intimacy in a relationship.

Unfortunately, not too terribly long after we met, my RA began to get worse. Over the past four years, I have gone from (relatively now!) little pain to so, so much pain I can’t get out of bed hardly on more days than before. And I often need help with things – whether I ask for it is another story. It’s done a number on my self-esteem and my confidence. I get worried about how other people see me, sometimes to the point of obsession. I change outfits at least twice when I’m trying to get ready to go anywhere, unless it’s a quick run to the grocery store. I get worried about my weight, my rash, my psoriasis, and joint swelling. I don’t want others to see, because then they stare all the way through the store.

All of this naturally should mean that I have less sex, that I want to be touched less, and that I hate my body for the things it does to me.

But I don’t. If anything, I want to be touched more.

Why? There are a few reasons.

Sex is an amazing pain reliever.

No, seriously. Google it.

When you orgasm, your body releases endorphins (also happens during exercise, eating chocolate, and laughing!). These lovely little polypeptides have a similar chemical makeup to morphine. Once released, they make their way up to the brain, where they bond to neuro-receptors, give pleasure, and relieve pain. During sex, your body’s production of endorphins can increase up to 200%. That’s a lot of steamy sexy morphine.

And if you’re in love – real love, not puppy love – the feeling is that much more amazing and intense.

So next time someone gives a headache excuse, tell them they’re full of it 😉

One of the tough things about having an autoimmune disease is that there are often other conditions that go along with it. One that specifically loves to ruin sex lives is Sjogren’s Syndrome. This fun little condition dries out your body – your eyes, your mouth, your skin and, yes, lady bits too. Unfortunately, there aren’t a ton of options on how to deal with the latter, other than extended foreplay and lubricants.

It can get really frustrating to deal with. Nothing can ruin the mood more than trying and trying and your body just isn’t cooperating. That can make both of you feel like you’re inadequate.

But you’re not. Your body is just stupid sometimes. If you have RA, this is something you (probably) already know. Your partner needs to know that it’s not because you don’t find them attractive or that you don’t want to be with them. This is where a wonderful amount of communication makes life tons easier.

Also, a really good vibrator helps.

(If you’re dealing with Sjogren’s, check out the SS Foundation website for tips on how to deal with dryness)

Speaking of vibrators…

Some of the people I know dealing with chronic illnesses don’t have a significant other, for one reason or another. Some feel like they are not ‘good enough’ to be with another person because of their illness, and some are just in-between mates. But there’s nothing saying that you cannot enjoy sexy times alone.

Masturbation has a wide array of health benefits for both men and women, from preventing infections to lowering chances for type 2 diabetes to improving prostate and immune health to reducing stress and even more.

With all these health benefits, why aren’t we pleasing ourselves more often? Or, at least, why don’t we talk about it?

Okay, so as someone who has been recently dealing with hand pain, I can sympathize with the fact that this seems like a difficult task. But there are plenty of ways to get busy without putting as much stress on your hands.

Vibrators are often said as being a girl’s best friend.

Oh, those are diamonds? Oops.

Anyways, this can be still be true with RA, if you find the right type for you. If you’re hands are bad, you might want to consider a vibrator like the butterfly, that straps around your legs. Some of them even have detachable controls to share with others! But they’re also expensive. Lame.

Just whatever you do, make sure you have a designated battery changer. There’s nothing worse than wanting to get busy and not being able to unscrew your vibrator alone, or feeling like you need to get the grippy from the kitchen to have an orgasm.

And then realizing you need to clean the grippy more.

I also know people who have a collection of vibrators and toys, some that are easier to use on bad days, and some that are so good you won’t care how you feel.

On a slightly less mechanical note, there are worse ways to warm up stiff hands than to play around with yourself or with another.

And that can be a fun way to start some foreplay action.

Speaking of foreplay, I hate my body…? Okay, bad segue. And also, not true.

I may not be happy with my body. It might hate me, but I don’t hate it. I just don’t really approve of the things it does to me. Since going on prednisone 10/2010, I have gained a whopping 40 pounds total.

Yeah. I’m pissed. I feel like a beached whale.

At first I worked out and tried to keep it off, but then I started hurting too much and got lazy. I’m tired of the poofy face, of having a muffin top, and of not wanting to wear my bikini… which, by the way, I rock normally at around 200 pounds because I usually don’t care what other people think of me, when they’re not around anyway. Well that, and a lot of that weight is in the right places. Yay curves.

I might hate that my body fights me every step I take, literally. My knees, left more than right, make me remember the running I did in high school to lose weight and every bump, bruise, and fall they’ve endured. My shoulders hurt so bad sometimes, I can’t work because I push buttons on a computer screen for eight hours a day. And I’m not even going to get started on my ankles or my hands. Frozen digits don’t make for fun talk.

But I also know that I am beautiful and I’m sexy, in spite of – or even because – my disease. I am a fighter. I work hard to be active-ish, and I play equally as hard. My boyfriend does his best to remind me of that when I forget it.

Yep, he’s is pretty amazing.

If you follow me, you know that the past few months have been pretty difficult for me. I made the decision to change jobs and stop going to school because of how bad my disease has been getting. And all with basically ibuprofen as a pain medication.

No, it doesn’t work.

Recently, my arms have begun to experience more pain and stiffness. I try to wear clothes that are easy to take off but sometimes you don’t know when that’s going to hit. In the past two weeks, I’ve had to ask for a little help taking off my clothes. I’m sure he totally doesn’t mind helping 🙂 But seriously, I’ve never gotten a scoff, an eye roll, or the like.

It gets better.

More than a handful of times now, I have been in bed crying and trying to invite Chewbacca to come rip my arms or legs out of their sockets (apparently the force is not strong with me). These are not moments that I’m happy to share. No one should feel like that, and I HATE being so vulnerable. Then I think about that, and that gets me going.

But then imagine someone climbing into bed with you, holding you, and telling you that everything will be alright. And when you feel like nothing in the world is going your way and that you’d rather be anyone else but you, to have someone kiss you, love you, and make you feel like the luckiest person in the world is the most amazing feeling. I can’t even put it into words.

I don’t know how he does it, but he always makes me feel better. He might not make all my pain go away (though he has several times), but he makes me laugh and helps distract me from my brain trying to focus on the pain and all the things I can’t do. He also is my biggest supporter and my biggest help.

He makes me gluten free food, and tries to not eat too much gluten full foods around me. He loves doing this for me, because he enjoys making me happy by making things like hamburger buns so I can finally eat a real burger again.

He’s going to school right now, along with working a full-time job, so that he can make a ton of money when he’s done. He wishes I didn’t have to work so much, and he wants to do what he can to take care of me. He wants this – educating people about the pain I go through, which I love doing – to be my job.

I don’t know anyone in the entire world as amazing and as wonderful as that man. And he’s so humble about it, too: “You’re a people. You’re supposed to do nice things for people.”

Too awesome, right? But he’s like legit. His momma raised him right.

Some days, I worry I’m going to wake up to find the last four and a half years has been some crazy pipe dream.

I’m glad I haven’t woken up yet.

I asked some of my friends if they had any questions as I was putting together this post. A few of them did, and I incorporated most of them into the post but I’d like to share this one here.

Q: How does one make love when everything hurts and all the wrong things are stiff?

A: It does seem like a horrible idea to think about, right? But it doesn’t necessarily have to mean the normal crazy physical sex that you might think of at first. To be perfectly honest, I love things that switch up angles, but some of the positions are really hard for me to get into sometimes, especially with my knees being my worst joints. We have come up with some different positions that work angles the same way for the both of us, but allow me to lay down instead. A lot of the sexual activity I’m involved in has me on my back. Sometimes, I feel as though I don’t participate enough. But I also enjoy just being able to share that time with my boyfriend, and so does he. I would love to do more, and hopefully soon I will be able to.

Sometimes it does take a bit of foreplay before my body feels up to moving in certain ways. Essentially, I need to release enough endorphins to counteract the pain I’m already in so that I can enjoy my time with the boyfriend.

That just kind of pisses me off more than the rest of it, but c’est la vie I guess.

Don’t let your chronic condition take away your lust for life, for your happiness, or for your partner!

Further research:

Sex and Arthritis, The American College of Rheumatology

Go Ask Alice

Dr Doc Online

Sex With Arthritis, Everyday Health

Intimacy, Sex, and Secrets of Lovemaking, WebMD

Arthritis and Sex, The Dinah Project

Arthritis and Sex Positions, Coastal Health Info Service

Sex Positions Guide, Sex Info 101
This website is helpful because it categorizes sex positions, but also includes a 3D model of what the actual movement during sex would be like. It can be a super useful tool to seeing if you think a certain position will make your hip feel worse, aggravate an injury, etc. But it also has tips on massage, masturbation, and sexual health. Just try to stay away from the weird comments, eh?