Today I woke up feeling awful. Actually, “woke up” might not be the right phrase, since I didn’t really sleep. I spent the night tossing and turning, not able to figure out what was keeping me up, until suddenly my alarm went off and I knew I had gotten maybe three hours’ sleep. At which time I began taking an inventory of what was going on in my body, and discovered that most of my major joints were hurting me badly in most positions I tried to assume. At which point I realized that I also had a headache, a slight sore throat, and the kind of dull, brain-foggy stupor that always accompanies a rheumatoid arthritis flair. At which point I decided to take a sick day.
I’m not sure how much I talk about this on this blog because it’s something I try not to let define me or my life, but I’ve had rheumatoid arthritis since before I was a year old. This is a condition that causes chronic pain, fatigue, and acute swelling and deformation of the affected joints. It’s an autoimmune disease in which the body attacks itself–in my case, my wrists, elbows, and knees (mostly those, although from time to time my hips and ankles join the party) become inflamed and try to eat themselves for no reason. For the most part I’m very lucky in that I’ve had the disease for so long that it has become a part of my life without really changing it; I can’t separate myself from it in any meaningful way, so I just accept it. I am probably more fatigued and achey than most of the people around me on any given day, but since I’m used to the exhaustion and the pain, I don’t notice it unless it flares up. Like it did today, probably as a result of the cold weather and some anxiety I dealt with over the weekend. It’s not a big deal; I take the day off, work as much as I can from home, and hopefully the extra rest, coupled with exempting myself for a day from the jostling and temperature vacillations of my daily commute and the pressures of my 9-5, will have me feeling mostly better tomorrow.
Typing may not be helping. Actually, my wrist hurts pretty badly right now. But waking up feeling like this made me think about people like me who live with chronic pain, and especially those for whom the onset of the pain came later in life. If I had spent most of my life without a chronic disease, accustomed to the limitations it gives me, and suddenly was living under the influence of pain, fatigue, and the pressures those put on me… What would I do?
Naturally, given that this is me we’re talking about, my first thought went to sex. Would I still feel sexy? Probably not. Even though I’m used to this, getting out of bed today was tough enough. The idea of trying to “be sexy” for my partner while my joints are trying to stop me from moving through any means necessary? Almost unimaginable. Luckily, I have a partner who thinks I’m attractive even with unwashed hair and in sweatpants, but that might not always be so. How, I wondered, do people living with chronic pain manage to have active sex lives?
This is a big question. Not just for me since, as I age, my awareness of my disease grows. But for everyone. Sexual dysfunction due to medical problems is a massive issue, but one that doesn’t get much air time. I did some cursory internet research to see what’s out there on the topic and was edified to find a decent body of proscriptive information.
According to WebMd, “as many as 50 million Americans have chronic pain… [and] almost 80% of people living with chronic pain and/or disability and their partners report a significant reduction or loss of their sexual functioning.” That’s a lot of people dealing with trouble in their sex lives because of situations out of their control. And that’s not to mention people with other medical problems that keep them from enjoying sex, not least of which is simple physical disability. The handicapped and disabled are a huge portion of our population, and one that gets largely ignored by the mainstream when it comes to sex, because thinking about people with disabilities getting it on doesn’t fit into the standard definition of what’s “sexy.”
But, as I was very pleased to see pointed out by the Mayo Clinic in its first paragraph on the topic (I love these guys!), “People need physical and emotional intimacy almost as much as they need food and shelter.” Holy crap! A major source of medical information admitting that sex is an important part of human health! If I weren’t in so much pain right now I’d do a jig of joy. As it is, though, let me recommend their simple, yet enlightening, step-by-step plan for overcoming the obstacles to physical intimacy that often accompany chronic pain, like ignorance about how to proceed, feelings of low self-esteem when pain makes you less active or feel less attractive, lack of communication with your partner or yourself about the situation, and so on.
In all the articles I read, the main issue at hand seemed to be–totally unsurprisingly–communication. For lots of people dealing with pain every day, it’s easy to feel isolated and alone, unattractive and uninspired. For the partners of those experiencing the pain, this withdrawal can seem like a big “DO NOT ENTER” sign when it comes to sex. But as is always the rule in every sexual relationship, maintaining open communication about needs, desires, and the lack thereof can help everyone find out what works, what doesn’t, and how to make more things work. A doctor interviewed by Health Magazine puts it plainly, “Ignorance coupled with fear are common enemies of sexuality.” Absolutely!
Health Magazine says, “The subject can be broached from several angles, but the main lesson from doctors and couples is this: Communicate.” Sex with chronic pain can require patience, sensitivity, and a lot of creativity, especially for those for whom sex itself is painful. But working on it to get what you need out of sex and intimacy, doctors are quick to point out, is well worth it. “As doctors, we prescribe external opiates, but the best opiates around are the natural ones that the brain produces,” says Dr. Gevirtz in Health Magazine. “If you can give someone an orgasm, they will have a flood of endorphins and their overall pain numbers will go down.” …hehe. Go down.
But no, seriously. One couple interviewed by ABCnews.com, who deal with both arthritis and fibromyalgia schedule two nights a week just to be alone, during which they set no expectations and no goals, but experience intimacy no matter what level of pain she’s in. They recommend: “Millions of pillows. Low impact positions. And realize this is not something you can do in ten minutes — it takes hours and hours. You have to think of it as an entire evening.” Props can help. Role-playing to take your mind off the pain. Gentle touches and the ability to say clearly when those touches don’t work. A sense of humor. Everything that makes sex good normally, but double it.
Bottom line: dealing with sex can seem like the last thing on your mind when you’re in pain. But it’s important for your mental and emotional health, and for your partner or partners if you’re in any kind of relationship. Make it happen. Do it with care and conscience, and keep trying. And if, for those of us living in the sex-positive, porn-loving, openly-communicating bubble, these tips seem so basic they hardly bear mentioning, read this forum to see how easily the idea of communication paired with creativity and acceptance can get lost in real people’s lives, on the Chronic Pain Support Group.