Chronic Fatigue Syndrome, or myalgic encephalomyelitis, is one of those disorders most people don’t really understand. In my experience, even knowing someone with the condition doesn’t necessarily elicit the compassion from people other disorders might. CFS being so misunderstood may top the list of reasons.
When I share my condition with others, I’m often told to take a nap or go to bed earlier, both of which would probably do me some good, but won’t cure me of the fatigue I experience every second of my day. I’ve also heard I should exercise more, something that is nearly impossible but for a few specific kinds of exercises due to also having postural orthostatic tachycardia syndrome, a form of autonomic dysfunction that causes vertigo and sometimes fainting.
I think most find it hard to understand feeling exhausted all the time, often to the point of not being able to sleep, or compare it to feeling tired. Before I got sick, I know I wouldn’t have totally gotten it either. The important takeaway, though, is that CFS impacts absolutely everything about my life, including sex.
Because I was single for a long time with a few short-lived relationships here and there, sex wasn’t a big concern of mine after I got sick. Sure, I felt horny at times and masturbated if I felt up to it, but having several debilitating medical conditions, including one that saps all your energy, I put sex pretty far down my priority list. What energy I did have, I had to put into working. All the rest of my time was spent recovering from work until my next shift.
It wasn’t until I met my girlfriend that I even put much thought into sex with another person beyond more than a passing fantasy. I didn’t have much reason to despite the fact that I enjoy sex. But my girlfriend rekindled feelings in me I hadn’t felt much since college.
I think it was more than just the fact that it was nice to have sex again, but that it was nice to have sex with her. I feel so lucky to have met her because she is the most patient, compassionate and kind person I know. She appreciates and cares about me and prioritizes my boundaries. It all makes the experience of having sex with her very fulfilling despite having CFS.
There are some days when I can barely do more than collapse into bed because I’m so exhausted and sore. I feel like crying if I’ve forgotten to brush my teeth and have to get back up. Those nights we don’t have sex. I wouldn’t remotely be present if we tried, and my girlfriend doesn’t push me like I’ve experienced in former relationships. In fact, she calls things to a halt if she even thinks I’m hurting beyond what’s normal for me.
I sometimes feel bad, like I’m not fulfilling my role as her girlfriend. I know no one owes anyone else sex for any reason, and I would never feel she owed me sex if our situations were reversed. It’s so easy, though, to slip into depressive thinking when I already feel low. It’s something I’m actively working on.
On those bad nights, my girlfriend cuddles me, assures me she loves me no matter what and says my well-being is far more important to her than sex. Even though I already know, it really helps me to hear her repeat it.
When I do feel up to having sex, I’m often very weak and can’t be on top long before my arms start giving out. This is a drastic change for me — I used to be an athlete, and then CFS happened. Everything about being sick is at least a little frustrating. But I’ve adapted, and the way I have sex has too — for instance, we now switch positions when I start to feel weak.
One benefit of having CFS is that it has forced me to be very open about what I’m feeling before, during and after sex. I have to; otherwise I might hurt myself and not be able to move much the next day. I was very shy and lacked the confidence to say what I wanted before I got sick. I tended to deny my own wants and needs in favor of my partner’s, something I’ve since learned is extremely unhealthy.
Having such open communication during sex is characteristic of our entire relationship. We talk everything through, even when it’s difficult, and grow stronger together as a result.
The bonus of having great communication is that sex between us is amazing and very satisfying. While CFS has created some barriers in my life, it’s also pushed me to be honest in a way I maybe wouldn’t have otherwise. I may never have learned to take care of my body and needs in the ways I do now.
It’s hard to be grateful for something that has changed every single thing about my life, but I can appreciate a perk when I see it. Sex is one of them.