My husband and I have been together for 16 years now just over 11 years married. Back in 2000 I was diagnosed with Fibromyalgia and our sex life was fine. Unfortunately, that was not the end of my chronic illness parade. I have been diagnosed with BiPolar Disorder, Agoraphobia, General Anxiety Disorder, Clinical Depression, Chronic lower back pain that causes Sciatica among other back issues, and finally about 6 weeks ago Ulcerative Colitis! As you can see, with the last one, sex is the last thing on my mind.
He has stood beside me through all of this (sickness and health and all). But with all of my health issues, sex has taken a huge back burner to everything else, medication, doctor appointments, going to bed early to SLEEP, naps during the day, icky moods, and so on and so on. I know you have talked about this in the past, but I think a refresher blog might be in order. We are a forgotten minority and we need help too.
Thank you for taking the time to email and share some of your story with me. Talking about this stuff is rarely easy and asking for support takes energy, which is something you are probably cautious about using up in your own life. I read a lot of caring for your husband and for yourself in your email.
While I get what you mean when you say that sex is the last thing on your mind, I want to point out that it's not true. You thought about sex before you wrote to me. And you took the time to write, which also seems like a sign that it's a topic you are thinking about and do care about.
But I understand that the kind of sex we're all "supposed" to have, the kind we see on TV and in the movies, read about in magazines, watch in pornography and learn about in most sex education, may be the last thing on your mind or the last thing you can imagine having. That makes sense when you think about it. You may have noticed that that kind of sex never seems to involve people who get tired easily, people who are too depressed to get out of bed, people who wince at the idea of being touched because most of the time when people touch us it hurts. It's a limited and normative ideal of sex that really doesn't work for many of us. That doesn't stop people from spending years struggling to fit their desires into that generic mold.
So yes, if we're only talking about the sex we're supposed to be having, you might say that sex is the last thing on your mind. But you are thinking about something, you are aware of how things have changed in your relationship, you are thinking about your own and your husbands satisfaction, and you are even going so far as to email a stranger to talk about it. I would say that it's on your mind in a significant way. I say this not because I think that it's good or bad (some people never think about sex and that can be great for them) but to point out that you are already taking care of yourself sexually and responding to sexuality in your relationship on your own terms, even as they bump up against the social norms of sexuality. The fact that your sex life may not look like other people's, and may not match the norm, is in my opinion not important.
I don't mean to diminish how it feels when we don't think we're meeting social expectations. That kind of pressure can be crushing. But I want to point out that those expectations aren't "normal" or "natural" even if they are deeply embedded in our culture and communities.
It seems to me like you've got most of what you need to figure this out and make change and that even though it's certainly easy to think that feeling stuck around your sex life must be about the colitis, the anxiety, the back pain (and sure, those things don't help!) the truth is that every one finds themselves stuck at different points in their life and we can all get through it regardless of what's happening with our bodies.
You didn't ask a specific question, so I'm not sure if there is one thing in particular you are trying to figure out, but in general I'd say the thing to start with, if you haven't done it already, is some very honest talk with your husband. It's not easy, talking about sexual problems, and you might want to think about setting down some ground rules, but it seems important that you each know what your desires are, aside from what you feel is possible now.
What I mean by this is that even if you aren't really up for engaging in sexual activity with your husband, if you still want to be sexual, if you still feel desire for him, he needs to know that, and you need to express it. That sharing of desire (which can be done without words or actions) is a crucial part of a sexual relationship.
Some people think that if they aren't going to act on a sexual feeling, they shouldn't express it. I disagree. You need to be clear, so it doesn't seem like a tease or like hollow promises, but sharing desire, even without physical touch, can be a way of staying connected if you're going through an extended time where a lot of physical contact just isn't possible for you.
It may also be important for each of you to share what your hopes are for the future of your sexual relationship and what each of you need right now. Committed relationships, where there is mutual respect and real caring, can tolerate a lot of disruption (for example, I'm always amazed that so many couples manage to survive the experience of raising a child). But it can be easier when there's a sense of mutual purpose. If you're both struggling in silence, there's less opportunity for you to support each other.
If you haven't talked openly and honestly about your fears and desires, both of you are probably filling in too much with your own imaginations. While sexual imagination can be a wonderful thing, projecting sexual dissatisfaction on to your partner is a lose-lose situation. Both of you may be coming up with things that are much worse then either of you are actually thinking or feeling.
The next step might be to figure out how you can compromise so each of you can try and get what you need given what each of you have available to bring to the sexual relationship at this time. If one of you is feeling super horny and/or sexually frustrated, can there be other sexual outlets? It's not uncommon for there to be a difference in sexual desire in a relationship. Sometimes couples have this idea that they must be everything to each other, to the point where they may feel bad or guilty about masturbating while in a relationship. But there's absolutely nothing wrong with taking a pragmatic approach to sexual satisfaction. They may be connected for lots of people, but sexual release and intimacy can also be distinct experiences. So it's worth thinking creatively about how you might change your sexual relationship to better fit with your lives which at this point involve you not feeling very sexy.
Which brings me to a final thought. You may also want to consider the possibility that there's a kind of sexual interaction you could be having with your husband that would work for you. It may be that what you really need at this moment is to be alone, to have a lot of physical and emotional space. If that is the case then that's what you should ask for (and what you deserve to get). But if there is something you are missing, if you wish there was a way to feel intimate or aroused or sexy, then know that it is possible. The answer is in you somewhere.
But you are battling a culture that works hard to deny there's anything sexy about your body or your mind. And culture is no small influence. It's both around us and in us. From the moment we're aware of it, cultural messages about sexuality routinely exclude folks who don't look, walk, talk, and think in the most normative and boring of ways. Finding a way to be sexual on your own terms is like decolonizing your mind. It's part of what I think Cherokee writer Daniel Heath Justice meant when he wrote that "Every orgasm can be an act of decolonization."
One way to begin to imagine alternatives is to turn to the rich representation of sexuality in disability culture. Whether or not the term disability or the identity of disabled fits for you, this is work worth checking out.
You can also start by asking yourself some very basic questions like:
What is it that I desire?
What do I want to feel in my body and about my body?
What would I like to share with and/or give to my husband sexually?
As you are answering these questions for yourself avoid the temptation to interrupt with a lot of "but" or "my body can't". There are always ways to work with our bodies. You need to start with what you want.
That alone is a challenge. Declaring a desire, a want, can seem inappropriate for those of us who are considered to be the "helped". The attitude that is often reflected back to us is that we should be happy we have the help/family/spouse/social support we have. We shouldn't want more. It's an ableist attitude that can stop you before you even start imagining something better for you and your husband. But if you recognize it for the bigoted nonsense it is, it can be easier to set it aside and get back to answering those questions on your own terms.