Sexy, single and disabled – but full of life and loving
Life can be hard when you’re beset by a disabling neuroimmune illness
IF I HAD known I’d get hit with a disabling neuroimmune illness when I was 24, I wouldn’t have waited until I was 20 to lose my virginity. I would have gotten an earlier start, making the most of my body while it fully co-operated.
When I was able-bodied, guys asked such questions as: “Have I seen you before in a dream?” Or “What did Botticelli do after he painted you?”
Cheesy questions, no doubt, but imbued with the assumption I’m a sexual being. After I became disabled, they tacked on still dumber questions, such as: “Are you contagious?” Or even: “Can you have sex?” (More than once, I’ve answered, “Yes, but not with you”.)
Sex is a potential minefield for all of us, but for years I’ve had to dodge the shrapnel on crutches.
I’m 49 now and have had myalgic encephalomyelitis, or ME – often inaptly called chronic fatigue syndrome – for more than half my life.
My symptoms include constant temperature fluctuations, increased susceptibility to secondary infections, dangerously low blood pressure, dizziness, swollen lymph nodes, extreme sensitivity to light and sound, frequent nausea, ongoing pain and punishing fatigue. (To say I’m tired is to say a person with pneumonia has a cold.)
On my best days, I feel as though I have a powerful flu. I’ve had two bouts in a wheelchair and a few long stretches when I could walk on my own, but almost always I need a cane or crutches to remain ambulatory.
I walk 1.5 to 2.5km each day with my gear, stopping as necessary, but am supremely grateful. According to the Institute of Medicine, roughly a quarter of people with ME become housebound at some point, so I’m thrilled that I’ve stayed surprisingly fit, even if I must spend most of my waking hours lying flat.
None of which sounds sexy, I know. Even I think: “How have I had great sex despite that cartload of symptoms?”
And, if I’m honest: “Please, please, please, may I have a time machine so I can go back and be well again or fast-forward to the discovery of a treatment or cure?”
Unfor t unately, t i me- t r avel research lags. And while the National Institutes of Health, the Centers for Disease Control and Prevention and Stanford University’s team, led by a Nobel laureate, are working to treat or cure ME, so far they’re just slightly ahead of time travel.
They have established that ME is multi-systemic, degenerative and potentially fatal. Possible treatments are in the offing. So far, though? Zilch.
Which means I’ve adapted, mostly because I’ve had no choice. I still love sex. Parts of me are disabled, but my libido is as strong as hell.
Yes, I’ve had ME throughout most of my sex life. But I’ve stayed sexually active, learning to accommodate my needs and my partners’ needs without ending up in traction or in the morgue.
It has required creativity, playfulness and the sonar of a bat. All of which should be part of the deal, anyway.
In a weird way, disability brings me closer to my partners because we have to communicate openly from the start. Doofuses can’t hack it. (I’ve had several long-term relationships. I’m single again because my partner died seven years ago and I ended an engagement last year.)
The US census shows that 1 in 5 Americans has a disability. Anecdotal evidence (online and in-person support groups, for instance) suggests that many of us are sexually active and have found ways to work with or around our disabilities to have fulfilling sex lives.
Let’s pause and note that disability is a big tent. Not all of us have the same symptoms and not all of us have the same physical parameters.
I have one of what is called the “invisible disabilities” – a term often used to describe ME, multiple sclerosis, lupus, Lyme disease and others – wherein a person is extremely ill but usually looks well. (Several times a week, a stranger notices my crutches and asks: “What’d you do to your leg?”)
Of course, some persons have disabilities that preclude sex entirely. Or, say, a person undergoing chemotherapy might want or need to avoid sex temporarily. It’s imperative that their wishes be met.
No one with a disability should be pressured into sex when their body will not accommodate it. Nor should anyone treat them like a subspecies of human.
If a person with a disability can’t have or doesn’t want sex, that doesn’t mean they don’t want or need love. That should be clear to all sentient adults.
Too often, the able-bodied seek examples of high-performing persons with disabilities. And many of us are high-performing, maintaining careers and active sex lives.
But it’s hard. Harder than an able-bodied person can know.
We’re held up as examples, though, as if to chide persons with other disabilities: “See? Look what
Parts of me are disabled, but my libido is as strong as hell
you can do if you try!” And that’s unfair. Each person with a disability is navigating life as their body allows, inside and outside the bedroom.
Was sex easier for me when I was able-bodied?
Unquestionably. Is it still fun for me now? Hell, yes. I’m grateful I can still romp. I’m particularly grateful when a partner understands my body.
In this way, at least, the disabled and the able-bodied might have more in common than they know.