Date: November 15th, 2016 11:28 AM
Author: impressive diverse selfie national
Hmmm...
"How to Feel Sexy When You’re Sick and In Pain"
On sex and illness, humanity and relationship, and what you owe your partner.
BY: EVA HAGBERG FISHER / FEBRUARY 9, 2016
http://www.everup. com/2016/02/09/eva-hagberg-fisher-medical-advice-sick-sex-drive/
Welcome to “How to Go to the Doctor,” our twice-monthly advice column by Eva Hagberg Fisher, writer and author of the forthcoming (’18) memoir HOW TO BE LOVED, a distillation of eight years of going to every conceivable kind of doctor following an incorrect diagnosis of intracranial germinoma, idiopathic chronic fatigue syndrome, and anxiety; and correct diagnosis with an intracranial Rathke’s ceft cyst, ovarian dermoid, and mast cell activation syndrome.
Dear Eva, I have an awkward parent-saying-let’s-talk-about-what-puberty-is-going-to-do-to-your-genitals problem. I’m engaged, and my fiance has the average sex drive, but I’m having a tough time getting past this chronic pain plus weird side-effects from medication, including medication-induced bloating to the point that I literally look pregnant. All of the chronic illness/disabled sex stuff I have read focuses on how much we should sexualize disability and value that drive, but none of it really seems to talk about how we’re supposed to actually do the sex, especially with my: “I’m sick but I still want to bone you but, oh wait, I am unable to do that because I feel like my limbs are falling off (I have some unspecified hyper-mobility syndrome in addition to my fibromyalgia so sometimes it really does feel like that!) and all of these pain medications I’m on are making me into a chumpasaurus who just wants to watch Star Trek…JEEZ.” And his: “Hey, I have a ween and it likes doing stuff to you. Let’s do stuff?” Our relationship is getting all sorts of unbalanced because they’re trying all sorts of new meds to try and get my shit in order, and he’s trying to help me feel better about all of the previously mentioned stuff by buying me new clothes that fit and make me feel like the raddest person ever, so I feel like I’m being pulled back and forth between zombie sweatpants and seventies space murder lady, and I just don’t really know what to do? I don’t want to lay back and pretend my pain isn’t a thing, but I also don’t want to throw away this important part of our relationship, or jam it in the back of the fridge, at least. Help me angel of sandwiches and medical stuff—I totally want to be sexy but feel more like a cat butt, and you’re my only hope.
I promised to answer this column last time (two weeks ago) and I started thinking about it and I really, really, REALLY wanted to come back to you with One Simple Trick. And Just Try This Thing. And Don’t Give Up Hope. And all that garbage. Because that’s what we’ve been programmed to do when we look at sex and disability. Have pain in your shoulder? Lie on the other shoulder! Have intractable pelvic pain? Just get super into boob stuff! Feel like if you are ever touched by anyone else again—because for three/eight/27/35 years you have been continuously touched for examination purposes—you will explode? Cover yourself in a thin film of cling wrap so that nothing can actually get through!
But I didn’t have any of those One Simple Tricks or Just Try This Thing. Also, you have been in your body for however many years you’ve been in it, so chances are you’ve already tried all the tricks. All the Things; all the Hope. Anything I can think of you have probably thought of already.
So I guess we just have to get real. Ugh.
I’m gonna start by saying that this is one of the worst parts about being sick. And I don’t think that’s just because being sick is a completely terrible experience full of pain and fear and suffering and all that super fun stuff that gets left out of the inspirational Just Try This Thing tropes. I think it’s because there is this cultural pressure, particularly on sick women, to figure out how to provide sex to our partners. I asked around for stories about how my sick community deals with sex, and almost everyone who responded focused very much on their partners: how patient their partners must be; how bad they felt that they weren’t providing sex to their partners; how they worried they were that the relationship would fall apart because they weren’t having sex, or at least not the sex they were sure their parters wanted.
And I don’t think that’s the problem—in my experience, that hasn’t ever actually been a problem in the first place.
In my experience, the problem has been that because of my combination of long-term and acute illness and pain, I am so profoundly confused about my body and what it is for and who has access and who should have access and for what reason, that I can’t even contemplate bringing another person into the equation until I’ve started to heal those wounds. I was just talking to my husband about this column—and we were remembering that when it felt like a struggle, our sex issues weren’t that he wanted to have sex all the time and I didn’t. Our issues were that I felt that because I experienced so much pain and uncertainty in my life, and because I had so much fear around losing my body and losing the ability to feel pleasure, that any time I felt good I felt that I was owed sex as comfort. Or sex as a reminder that I wasn’t just a patient. Or sex as a prophylactic against future pain. Our issues were that I had no idea how to be in a body that felt like it was on constantly-shifting ground. Our issues were mine.
A year ago I was heading into a surgery that we thought was going to turn into a cancer diagnosis, and I felt profound pressure to have as much sex as we could before the surgery, because WHAT IF THAT WAS BASICALLY MY LAST CHANCE. And my husband—then my fiance—was like: “Nope. That’s not my vibe. I’m not into giving you a thing that you think you deserve because you think this is your last chance. I don’t actually owe you my body.” And I was apoplectic and felt that this was profoundly unfair because didn’t he see that he owed me this One Simple Trick of Doing Sex On Me? What I couldn’t see was that he wasn’t seeing sex as something that is owed to your partner as part of the deal.
And so I come to this solution to your, to my, to all of our problems: We don’t owe each other anything. Whether we are sick or healthy or have high sex drives or regular sex drives or no sex drives or an intermittent sex drive or a sex drive that responds to medication or loose connective tissue or that heightens when you’re on one drug and then disappears on another. We never ever ever owe our partners anything. And so I am trying to fight against the idea of the “patient” partner or the “surprisingly loving” partner or all of these description of sick women’s partners that I’ve heard.
And this is hard for me to get my head around too. Because I feel moderate amounts of guilt that I am for some stretches of time completely unavailable and then jump to feeling like WE HAVE TO HAVE SEX RIGHT NOW BECAUSE I’M PROBABLY DYING TOMORROW, and the worst part of it is that that is ALL mine.
You write that your relationship is getting all sorts of unbalanced. I spent a lot of time in previous relationships keeping score on everything, making sure that things were balanced. If I did X amount of cooking, then my partner would need to do Y amount of grocery shopping. And then I met my friend Melanie, who I’ve invoked before, and she’s been in the air recently, and she continues to help me even though she’s dead, and she told me, when I met my now-husband who cannot cook (correction: I do not allow him to cook because he likes to put mustard on everything and once put some lettuce in the oven to “thaw”) and told her how I needed to give him some other job to achieve equality. And she, with the wisdom of twenty-three years of marriage and also just the wisdom she had accumulated by being a profoundly loving person, said, “Eva, you have to give up this idea of parity. Parity and equality are not the answer.”
So what if your relationship is all sorts of unbalanced? What about that is uncomfortable for YOU? It seems like your fiance is pretty chill with current ween status, and it sounds like he’s supportive of you being your best self. Which sometimes is in sweatpants and sometimes is seventies murder space lady. I’ve had to deal with my profound discomfort at my husband seeing me more often than not completely fucked up in hospital beds with a belly swollen huge from the carbon dioxide they pump in to give them access to my reproductive system for surgical reasons. And he’s seen me when I couldn’t (didn’t?) shower for a week after a breast surgery because I wanted to keep the dressing completely dry to avoid infection; also, who wants to shower when you could just lie in bed eating crackers?
He’s seen me falling apart crying because I can’t figure out why I’m having anaphylactic reactions to twelve apartments, and he’s seen me wear the same pair of horrendously fitting Sedona Gap Outlet sweatpants for like two weeks in a row. He’s also seen me in my completely fucking baller James Perse dress and also the incredibly stunning dress that I married him in and also the sparkly romper that I put on for our wedding reception—and, yes, we contain multitudes.
The hardest thing about sex and illness is that it gets into the deepest truths about humanity and partnership.
Maybe there isn’t such a difference between sick people having sex issues, and not-sick people having sex issues. Or, at least, there isn’t such a difference intra-partnership. Everyone feels some form of rejection, or hope, or fear, or not-feeling-it, or feeling-it-too-much, or being wounded. I’ve done enough yoga to know that everyone is injured. Every. One. We all have trapdoors of pain and darkness and hurt and regret and isolation and terror and also the sparkling hope that it can change. We all have those trapdoors. Illness just has a way of making them (a) visible and (b) un-ignorable.
My only Actual Advice Tip is to do what I’ve had to do for myself, which is to gently wake up my sexual body in whatever way I can. I choose to do Forrest Yoga and Forrest-inspired Stellarflow yoga, which has helped me to (for the most part) gently and consciously address and work with not only my physical body but all the emotions in that physical body. I also sometimes need an hour to myself with some seriously dodgy erotica, which is a way for me to remind myself that my body isn’t only there to be managed or observed or cut into. Getting into my own sexual mind and heart and body on my own has helped me to remember that I’m not just a broken body that needs to be fixed, or a temporarily un-broken body that deserves some pleasure at someone else’s hands.
I wish that I had more answers for you. But I think the answers for this are the same as the answers for everything. We have to take care of ourselves first, before anything else. We have to truly hunt out what is a need and what is a want and what is an expectation. My husband and I have spent the first ten months of our marriage either in different states, in different rooms, in different beds. It’s not what I think a new marriage should look like, but it’s what we both need. I need to sleep through the night after years and years and years of shattering insomnia, and I can, when I’m alone in a bed. And he likes to stay up late. And when we forget about parity, or owing each other anything, or being the Right Kind Of Sexually Available Partner, then we get to forge a deeper intimacy, based on absolute love and kindness and respect for the other as a whole being that, yes, includes a sexual part but that isn’t predicated on it.
So my advice to you is this. Slow down. Accept the love that your fiancé is showing you (which is hard AF, and I know this from experience). Forget about keeping score, or about equality, or about giving him anything that you think he needs. Explore your own inner sexuality, and how you want to express that. And if you have zero inner sexuality right now, totally just jam on the fact that you guys can watch Star Trek together and are excited about a lifetime commitment. I hear a lot of love between you in your letter. Hold on to that, and if you can, believe that love can be expressed in infinite forms. Some of them ween-related. Many of them not.
HOW TO GO TO THE DOCTOR, ILLNESS, SEX DRIVE
(http://www.autoadmit.com/thread.php?thread_id=3430131&forum_id=2#31914006)