M.E. SAYS NO
It is now almost 13 years since I last had sex. It feels unreal that it has been that long. I became ill at 28, right in the prime of my life. I am 47 now, and I feel like I am missing out on the most sexually active years.
Sex has never been at the forefront of my existence, but I still love it. And it is not only the act itself. It is meeting someone. Getting to know someone mentally and physically. The flirting, maybe at a bar, a party or a club. Doing our little mating dances.
I have been in longer monogamous relationships where you really get to know someone inside and out and learn exactly which boxes to tick. There is the deep connection of sexual love where sex grows and hopefully also reinvents itself over the years. But also the hot and steamy, or absurdly clumsy, disappointing one night stands and everything in between. I miss all of that.
NO SEX AND THE CITY
For those who do not know, I have a disease called ME. The hallmark symptom is post-exertional malaise, where even the most trivial overexertion can make you more ill. This can last days, weeks, months or trigger permanent deterioration.
I have a severe form of ME. I am mostly horizontal, either bedridden or in my reclined wheelchair. I do not tolerate light, noise, talking, people in the room, touch and so on. I might very cautiously push myself if I am having a good day, but at great cost. That also makes having sex in any form extremely difficult. For some people with M.E. who became ill as children, it means they’ve never had sex.
As an openly gay man, finding a sexual partner in the gay scene in Amsterdam is not that hard, but it is not easy to find someone who can handle all the caveats of my disability. Dating sites are rather depressing. Once people hear about my illness and limitations, many conversations end right there.
I have even wondered what it would be like to work with a sex worker who specializes in supporting people with disabilities. But I am not comfortable with the idea. Not so much for myself specifically, but with the concept of a sex worker in general. And then there are the worries about STDs and infections. ME is often triggered by infections, so I simply cannot risk any deterioration.
Plus I have to admit that I would much rather have sex with someone I have a deeper connection with. I guess I’m a hopeless romantic.
BALLET BUNS OF STEEL
In a way, sex feels similar to my dancing career. A career that is long gone because age, physical ability and certain aesthetics are fleeting. It is something I will never get back. Yes, I might still be able to dance and have sex when I am older, but it will not be the same as it would have been today.
Sex is not only about having sex with someone. It is also about feeling good and sexy in your own body. If I were still healthy, maybe even still dancing in some way, my body would be in shape or at least trained. Right now it is a soft, saggy, untrained mess, and I am not sure I will be able to get that back.
I did have relationships during my milder years, before 2013, but sex felt like running a marathon. I did not have the stamina. A quickie was the best I could manage.
ME is sometimes called an invisible disease, so people cannot always tell you are ill, especially in the milder stages. People who did not know me from my dancing years saw someone who needed a lot of rest and had an average, untrained but acceptable body. They could not really tell what was wrong. And honestly, I did not fully understand it myself back then.
What was clear was that I could not enjoy sex or perform the way I wanted to. But that was not the real me. I also felt insecure about my body, because this body is not the body I would have if it were up to me. I sometimes received comments that I was not in shape or even advice on how to exercise. That was painful and surreal for me as a former professional athlete.
At that age, when both my partners and I were full of plans and ambitions, it was not easy to find someone willing to settle down with a person who could not join in fully, both inside and outside the bedroom. My partners could feel the fire burning inside me, but physically there was simply no fuel to keep it burning long enough for me to function as I wanted.
IT DEEPLY SUCKS
There is, of course, still masturbation. But even that is tricky. I have to be extremely careful not to overexert myself, and when I am doing very poorly I have to abstain from it because it can set me back for days or longer. The problem is that my libido has not really changed. So I have a body with needs, but I cannot act on them. Having a body and mind that want sex, even with myself, but cannot have it, resisting it becomes an overexertion in itself.
Right now all I can do is think and fantasize about sex, about past moments and future possibilities. I hope that one day I will again be able to enjoy one of the greatest pleasures we are given.
But in the here and now, in reality, there is no kissing, licking, sucking, jerking, humping, sniffing, fucking and so on. And in my worst years there was not even any possibility to look. Well, technically, there is still sucking. This s(h)ituation truly sucks. It sucks ass. It sucks deep, hard and badly.
Seriously. What an absolute fucking mess.
Fuck me.
Fuck M.E.
