The Press offers you every week a testimony which aims to illustrate what really happens behind the bedroom door, in privacy, far, far from statistics and standards.
Today: Anna*, early forties.
Anna* has multiple sclerosis. She knows that her condition is not going to improve. Nevertheless, she has a lot of ambition for the future of her sex life. And just as many questions…
“Nobody talks about that! I’ve been sick for 20 years!” […] And I have no idea how this is going to end, all of this…”
We’ve talked a lot about the sexual loneliness of caregivers in this column for the past few weeks. “But us! What do we do with us!” asks our dynamic interlocutor, who we met last week in a charming café on Wellington Street in Verdun. Let’s be clear: sick people also experience sexuality. It’s high time we talked about it, she says. So, let’s talk about it.
Dressed all in black, with a number of tattoos, Anna, in her early forties, frankly does not look her age. At first glance, she also seems in perfect health, even with a cane at her side. And yet, she has a lot to tell.
It must be said that her sex life, well before the arrival of her illness, started off rather well. From her very first time, around the age of 15, with a lover, she had fun. “I was privileged. The first time, I had a killer orgasm. […] Yes, there was pain, but I also had the fireworks.”
If it happens again? “Yes, but not every time. […] It’s very guy-oriented. His enjoyment, his pleasure. Once he’s done, it’s over!”
A few lovers follow, before Anna enters into her first “adult stable relationship” at the turn of her twenties.
He’s a great friend, they get along wonderfully, except… in bed. “He’s not comfortable,” she analyzes in hindsight, “and I’m not able to get him to have more fun.”
It was also at this time that Anna had her very first crisis (numbness here and there, suddenly), then a second, before the fateful diagnosis was made. Reaction? “I can’t stop my life,” she replied. For her, this verdict rather implies:
Girl, you live your life the way you want to live it!
Anna, early forties
That’s why Anna is very clear with her boyfriend: “If you want to leave, leave,” she tells him. But he chooses to stay.
For her part, once the crisis has passed, given the few symptoms, Anna does not feel so ill. “I manage.” And their sexuality? “It did not affect her so much, as we are already not very keen on the thing…”
Except that’s not all: mister doesn’t get involved much, neither in bed, as we said, nor in the house, and even less in the kitchen. “Just cuddles, there’s no such thing…” Anna illustrates, exasperated. She leads a large life, and in her mid-twenties, she ends up dumping him.
Two years later, she made another great friend, with whom she got into a relationship again. He obviously knew that she was ill, she was already walking with a cane at that time. In bed, this time, it was night and day. “Sexually, he was a great champion,” she smiled, “but still oriented towards ‘guys.'” We couldn’t get out of it. Which didn’t stop her, she pointed out, from having had “practically” an orgasm every time with him. “It must be said that with the other one, it was so ordinary!”
But what has to happen, happens, and Anna’s illness ends up “progressing.” “There comes a time when you get worse,” she explains. And not a little. “It won’t get better, one day I’ll be in a wheelchair.” Hard to believe, when you know that she ran several half-marathons at that time and in her thirties. To give you an idea: “My walking autonomy, today, is 4 km…”, she says.
But who says “deterioration” obviously says fatigue. “At some point, I’m so tired. So tired!” But again, the gentleman doesn’t seem to realize it. “Why are you tired all the time?”, “when are you going to get better,” he asks. “And I work, and I take care of everything at home…”
Is it because of this lack of involvement again, or his fatigue, or an unfortunate mixture of the two? The fact remains that their sex life takes a big hit.
And I know it frustrates him, but he doesn’t say it. He’s never been able to talk about it. He’s never talked about the disease. Ever. In fact, he asked me one question: Can you die from this?
Anna, early forties
We can guess what happens next: they end up breaking up. That was a few years ago, when they were in their forties. Does breaking up scare her? Not exactly. “It’s better to be alone than in bad company,” they say. […] And I’m curious about life: what will it give?
Anna quickly realized, and after a handful of encounters, and as many one-night stands (to whom, it must be said, for a one-night stand, she said nothing about her illness), that dating apps were not for her. “If I don’t know the person, I’m not able to give myself up!”
Since then, everything has fallen apart. Anna had another crisis, her physical and mental state has deteriorated dramatically, to the point that she found herself on sick leave. It was there, with time on her hands, that she decided to educate herself. To read, to listen to podcasts, to find out about the future of her sexuality. In vain. “I realize that for people like us, there is nothing, no tips, no leads!”
Yet, she has questions galore: “Doggy style, can I still do it? What about more complex positions? What am I going to do with the body I have?” How do you know when you’re alone, when you have no one to test with or to ask? “No one talks about that! My neurologist, my nurse, no one talks about it!” […] We don’t have any support for that! […] There are other priorities, she concedes. Except that if it’s chronic, it’s something that needs to be addressed!”
Beyond the practical and very technical questions, she continues, how can she meet people now that she doesn’t know what her next year or even her next week will bring? “It’s insecure!”
One thing is certain: “we will have to be on top of things in communication, because having experienced it, frustrations build up very quickly.”
This is what she would like caregivers to take away from her testimony: “We have to talk to each other!”
As for her: “There’s no way I’m giving up on that,” she concludes. “It’s just too much fun. At some point, there are fewer and fewer of the little pleasures in life. What I can preserve, I’m going to do it…”
* Fictitious first name to protect anonymity
Write to us to tell us your story