In this post I will discuss sexuality, desire and arousal in relation to the disease ME/CFS. There will be no mentioning of explicit sexual activities. I’m writing this because I’m trying to figure some things out, please do not give me advice on how to practically solve the problems mentioned. If you find this an odd request, you can read more about why getting advice is an issue to me here.
The problems with arousal and ME
The core symptom of ME is that any kind of exertion gives me a dramatic worsening of symptoms called PEM (Post-Exertional Malaise), and my hypermobile joints cause me higher levels of pain for several days, this includes activities like having sex. It’s a problem during these days, since it makes me even more limited in what I can do and the symptoms make my suffering worse. It’s also a problem in a longer perspective, because my ME is severe and I’m going from one episode of PEM to a new one, and I don’t recover completely between the episodes. According to my doctor, this is probably the main reason for why I’m getting more and more severely ill. For every activity that I want or need to do, this is something I have to consider. I have to ask myself if an activity is worth the following PEM and the increased pain.
When it comes to sexual activities, there’s an element involved that makes it harder to make a conscious decision: arousal. Sexual desire and arousal makes me caught up in the moment. Before ME and the worsening of my joint pain, this was a good thing. I want(ed) to be caught up in the moment, that’s one of the nice things about sex. I analyze most things in my life thoroughly, and engaging in activities that make me stop thinking so hard is a very welcome break. But when it comes to sex nowadays it’s a problem, because having sex means I usually end up hurting myself.
The problem isn’t only the physical activity involved. Experiencing arousal of any kind, but especially sexual arousal, means physical reactions like an elevated heartbeat. It means feeling how my body hits the gas and accelerates, something that is more than enough to put me in PEM afterwards. This can happen even if I don’t engage in any kind of sexual activity at all, just the arousal part is enough. This means that I’ve started feeling guilty about not only what I do, but for having any kind of sexual desire. Because desire can lead to arousal involuntarily and that makes my symptoms worse.
Desire with guilt
I sometimes wish that I could stop feeling any kind of sexual desire, because it would make my life easier. Most of the time just the thought of sex is almost impossible to even think, and it is easier then. But then I have days when I’m reminded of that sexual desire is a part of me and it makes me question myself. Am I really as ill as I think I am, as the doctor says I am, when I struggle with my wish for having sex? I know this questioning of myself is just ableism speaking, unfortunately it’s loud enough to make me listen.
I have this idea that people in my condition shouldn’t want to have sex, like I shouldn’t be able to experience sexual desire at all. This in itself is the ableistic stereotype of people with illnesses and disabilities, that we can’t be sexual creatures. It also comes from the idea that severe illness is supposed to be acute, and either you get cured or you’re just counting down do death. During the period of illness, everything is on hold except from surviving. With chronic illness, this doesn’t apply. Life goes on, because living on hold isn’t possible for me anymore. Even though chronic illness is very common where I live, this cultural myth exists and it renders people with chronic illnesses, symptoms and disabilities invisible.
So. I’m not sure where I’m going with this. I’m trying to understand why I feel like I’m doing something wrong just by wanting to have sex, and I guess I just started to give myself some answers.