I haven’t dated much since my diagnosis but I have had sex a handful of times.
For me, rheum got my hands first. Not uncommon but when you’re dealing with swollen hands I guarantee you that one of the last thoughts you have is about how they will affect sex or your ability to pleasure yourself.
Like most health issues you focus your efforts and energies to getting a diagnosis, a treatment plan and hopefully getting well. Sex, depending on the severity of the illness may or may not factor in but when you are dealing with a chronic illness, well sooner or later sex does become a factor.
The truth is, in a lot of ways, I don’t feel or see myself as a sexual being anymore. It’s hard to when you’re being poked and prodded by doctors, pumped full of drugs with side effects like nausea, and your physical appearance shifts – swollen hands and feet, weight gain, and moonface. There is nothing sexy about any of that. Even worse, you might have sexual desire even for a moment but the pain and discomfort outweigh the value of pursuing the pleasure.
Manual masturbation isn’t even a consideration for me anymore. Even when pain levels are low, the dexterity and repetitive motion required becomes painful and causes hand cramps, wrist pain, elbow pain and shoulder pain. So toys. I’ve been a fan of them for years but now they are a necessity and not an addition to my sexual relationship to myself. It’s odd that for the first time, I view having to use my vibrator as distancing me from my sexual self.
In the last year, I haven’t had an orgasm that wasn’t accompanied by pain (and not the good kind either).
Sex = pain/discomfort
That equation is part of the reason I lack desire or pursue sex. Why would I want to do something that will knowingly cost me a pain-free day or three?
I was having sex for the first time after my diagnosis and my partner reached up and grabbed my wrists to hold me down – I yelped and the mood was broken because all I could feel was the pain in my wrists. I don’t blame him. It was something he’d done dozens of times before…it just isn’t comfortable anymore.
The second time I was ill prepared for just how much of my body was truly affected by my disease. I had taken extra pain medication in the hopes it would dull the pain. It did, ever so slightly. The truth was, I cut things off quickly because my body just couldn’t handle it. More pain than pleasure. For almost a week after that experience everything ached: shoulders, wrists, hands, hips, knees, etc…if I had a joint, it probably hurt. Again, my partner wasn’t aggressive and when I asked to change things up we did but my body wasn’t up for it.
When the dust settles, when I’m having good days in a row, when constant pain and anxiety about this illness of mine subsides I want what any woman or man would want: intimacy, sex, and plain old human contact.
So there’s the constant struggle – what my body needs and what my body can handle.
As a single girl there are times when I just wish I had someone to snuggle or be close to without necessarily having sex. It’s kind of an odd situation to say to a partner you’re not in a relationship with or even really dating, “Hey wanna hang out and watch a movie together while I ice or heat various joints?” So instead I spend a lot of nights alone heating and icing while snuggling my duvet or my body pillow I jokingly nicknamed Lloyd.
I’m lucky, The Film Guy knows about my Rheum and my limitations and the last time we saw each other was just after my birthday so I got what I wanted. A lovely evening in Toronto – dinner, lots of snuggling while we watched a movie and then sex! It was the best sex I’ve had in a year for no other reason than I was able to participate in a much for active way than I had previously. My brief time on Avara allowed to me to have almost pain-free sex!
I bought a book on sex and disability last summer but it wasn’t what I wanted. I tried the Arthritis Society of Canada. Nope. What I wanted we’re suggestions to help minimize pain and discomfort during sex. Show me. Give me examples. I like to read to understand all aspects of life and this is no different. The only resource that gave me, what I consider practical advice was the Arthritis Research UK site. If you have arthritis, I think it’s a brilliant site no matter where you live.
It seems like the major arthritis societies shy away from talking about sex. And if they do mention it, it’s in the context of a relationship and the advice is seek counselling. Don’t get me wrong that’s great advice but it doesn’t apply to everyone and certainly not this single girl.