Speaking About the Unspeakable: How RA Affects Your Sex Life

I'm in a rheumatologist's office, discussing starting methotrexate. This is long before the miracle of Enbrel and Humira, my first shot at one of the more serious drugs for RA, but my disease is flaring and something needs doing. Methotrexate is the gold standard and can be very effective. It is also very toxic so the rheumatologist is taking me through what’s necessary. Take folic acid, blood tests every six weeks to test liver function, and never, ever, even a drop of alcohol. They sit at the desk, turned away from me, writing notes in my file. End of discussion. Except I, having done my research, know that methotrexate also causes horrific birth defects.

"What about birth defects?" I ask. There’s a beat, then the doctor turns around, looks at me and asks, a note of alarm in their voice, "are you sexually active???"

They never think we are. When you live with a chronic illness or disability, doctors tend to assume that you don't have a life, nevermind one that involves physical intimacy. And it's often one of the biggest questions in the minds of someone who has just been diagnosed with RA (or any other chronic illness) or a person who has a disability. How will this affect my sex life? Will I still be desirable? What if it hurts? What if I can't do it the normal way? Will I ever have sex again?

Today, I am answering the challenge of the latest ChronicBabe blog carnival: to speak out about sexuality and chronic illness to help other women. And it is a challenge, because this is one of those areas that I consider private and not blog fodder. Especially since speaking about this in a personal way would also affect The Boy’s privacy - suffice to say we're very fond of each other and express this enthusiastically in a variety of ways.  A-hem. Therefore, what follows will be pretty general.

Yes, RA will affect your sex life and often in ways you didn't expect. One of those ways is that doctors will avoid the topic like the plague, so you'll have to bring it up. This can be nerve-racking. But it's also necessary because there might be information you need to be safe.

When you have RA, talking to your doctor about with which joints you need to be extra careful with during sex is a good idea - you don't want to spend a wonderful time with your beloved (or a perfect stranger, I'm not judgy) and have to heal for days afterwards. If you have RA in your neck, it is essential that you do not hyperextend it. Hyperextending - or bending your neck all the way backwards or forward - can, if your uppermost neck joint is unstable due to RA damage, cause a catastrophic spinal cord injury or kill you (nervous, yet?). Getting a CT scan of your neck is a good precaution. You should also teach yourself not to hyperextend during the throes of passion. You may wonder how this is possible, as it seems to be instinctive when you're having a really good time. Trust me - it's possible. You need to be a little more conscious and aware, but it'll soon become second nature. One trick is to bend your upper body slightly instead, i.e. do a mini sit-up (extra benefit: also excellent for your abs!). If you have a steady partner, you can also ask them to help you avoid hyperextending.

Endorphins are the best painkiller in the world. If you are in a lot of pain, find a way to have an orgasm. Much better than opioids (and more fun). However, taking a painkiller before you have sex can not only make it more enjoyable, but also give you more bang (sorry) for your buck (so to speak). Painkiller + endorphins = maximum pain relief. Be careful, though - endorphins can also mask your body's warning signals that something hurts, so to minimize painful aftereffects try to stay within your limits of physical activity. There's a great site that has information on arthritis and sex, including a list of positions that can be easier on your body.

Then there's the adventurous sex that you're convinced you'll never have again. Very few healthy/able-bodied people actually swing from chandeliers. Or if they do, no one's ever told me. Sex is 90% mental and that means the adventure is in the minds of the participants. Whether it's role-play, endless foreplay, use of props or any other intriguing activities you can find in books or on the Internet, how you approach this is only limited by your willingness to experiment.

What if your body has limitations, the kind of limitations that means you can't have "normal sex"? I don't think there actually is such a thing as normal sex and for those that say differently, I opine that they have very little imagination. Eating chocolate cake can be sexual and so can anything you and your partner find pleasurable. If your partner makes you feel like you're not good enough, not exciting enough or not sexy, dump them. There is someone out there who will think you are the most gorgeous and sexy person in the world. Don’t you owe it to yourself to find them?

Sex is a normal part of being human and just because you have RA, another chronic illness, or a disability doesn't mean that you're not human. Embrace your sexuality, explore it, own it. Know that you are sexy and sexual no matter what you look like or how many people won’t talk about it. Refuse to be silenced. Refuse to be neutered. 

The MyRACentral last and biggest Arthritis Awareness Month contest is now live. You can win a $200 gift certificate to CVS and I'm hoping for so many comments that I'll whimper when I have to judge them. You don't have to have RA to enter, so pop on over, leave a comment on the post, please spread the news and help make a grown woman cry!


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