chronic sex, resources, sex

Gettin’ Jiggy With it

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?

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  1. thank you so mutch for this post. When i found it in the WW13 comments, i thank " yes finaly someone is talking about sex!"
    sorry for the mistakes, i'm french and it's nerly 6 in the morning after bad awekings the last days with my AS and my fibromyalgia.

    You have an amazing man at your side. His mama raised him right ! ( i hope i'm raising my boy as good)

    I'm going to take a look at those sites especialy "sex positions guide"
    i'm so down when i can't go futher with my husband, i see that he's disapointed and try to hide it for me. And don't make me talk about my own frustration…
    So merci merci merci
    à bientot

  2. Hi Sophie!

    I'm sure you're doing a great job raising your boy 🙂 Whenever I meet children of friends with autoimmune diseases, they always seem the nicest and most caring.

    It can be really hard to navigate sex when you're sick, especially when you're flaring. And the fibro makes it worse I think than other diseases, because just someone touching your skin can hurt so very bad. I think that is my least favorite of the diseases that I deal with because of that. I hope that the sites help you out and can help start a dialogue between you and your husband. Communicating things is so key in sexual relationships, but even more so when there are limitations on what we might be able to do.


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