Feb 292016
 

The last day of February is Rare Disease Day.

Today I’m thinking about what I’ve learned from chronically ill friends and acquaintances, about the ways most chroniclly ill people’s lives continue, through all the treatments, all the doctor appointments, the sometimes daily medical tests, the waiting, the occasional or constant threat to life or current level of wellness. I’m thinking about the ways relationships and sexuality get shoved to the side when we talk about young people and adults with chronic illnesses, and about how that doesn’t always reflect people’s desires or lived experiences.

Being ill might change your sexuality (just like getting married, or losing a loved one, or making a giant life decision can change any and every part of you) but it doesn’t take it away. Being in pain all the time might make you want sex less (or it might make you want sex more). Changes to your body might suddently and dramatically affect how you express yourself sexually, but life changes will do that too – just sometimes less violently.

Going through treatments and surgeries might make you think you’re less attractive, or make you feel totally crappy about yourself, but those experiences don’t make your sexuality disappear. Feeling like an object because no one can figure out how to help you feel better, and because the most touch you get in a day is from medical instruments and hands that see you as an object of curiosity, not a subject of love, might make you feel less human, less sexual, but that’s you relating to your sexuality too – and you feeling less desirable doesn’t mmean you’re any less desired.

Having an illness – or two, or three, or six – doesn’t make you nonsexual. It doesn’t make you asexual either, unless that’s where your personal sexual identity lies.

To get all clinical about it, Sex remains an important contributor to quality of life in many patients with chronic illness and their partners.

Not surprising, but it also looks like healthcare providers aren’t talking about sexuality much. Why not? This researcher thinks one of the problems might be that:

Patients feel that if sexual health were important, their healthcare provider would raise the topic during the visit. At the same time, the healthcare provider feels that if it were important to the patient, the patient would bring it up. So, either side is waiting for the other to talk about it first and ultimately, nobody brings it up.

Sexual health isn’t just whether you have an STI, or a yeast infection, or are worried about fertility – though those things are just as important, and usually more important to talk about when you’re ill; sexual health is about your whole sexual self, and changes in desire, sexual arousal, or how your body physically responds to sex, how your illness affects your current relationship or dating prospects, has just as much to do with your health as anything else.

You might have to do sex and intimate relationships diferently. Having sex with yourself or a partner might get shoved lower on the priority list. You might want to do sex differently because you need it to do different things for you. Maybe you hold onto a sense of vibrancy and aliveness by diving headlong into the world of online dating, or maybe you make sure you wear something every day that makes you feel attractive. Maybe you use sex as a way to care for your partner, because they’re caring for you in so many other areas of your life.

Maybe you make sure you and your beloved are still connecting by scheduling dates at the hospital coffee shop an promising each other that, for one hour, you will not talk blood cell counts, bills from the insurance company, or which doctors have the bedside manner of a slug.

You might have to learn how to do sex diferently, but it’ll also help to know that Becoming an encyclopedia of disability and intimacy will only take anyone so far in growing a relationship with a disabled or nondisabled partner or playmate. Sexuality is part of that daily life you might really be craving more of as you cope with illness.

I, I don’t talk about it {sexuality} much, but I do feel that it’s important to talk about it on here because people need to know that it’s okay, and I had a recent experience that was just perfect demonstration of this, and that is that you can be lying in a hospital bed with tubes all over you, and your partner can walk in and see your brainwaves on the screen and be like, let’s conduct an experiment! And right there in front of the camera while they’re watching you for seizures, he can just grab you — in the hospital bed and be like, you are still totally hot to me.It was. It was pretty badass. It was, it was one of those moments where you just kind of, you don’t think of yourself as sexy. You think of yourself, we societally condition ourselves to believe that when you are in a hospital or when you are facing a chronic disability or illness that you’re not sexy.

— Sassy Outwater

That’s an excerpt from an awesome podcast on everything from seizure disorders, to Scottish music, to sex and disability, as lived experience and in romance novels. I think it speaks to the relationships between illness and sexuality better than any research or theory ever could.

Living with illness or disability isn’t one-dimensionally just about that illness or disability, and I think this Podcast shows that really well, with Sassy talking about music (AKA her work), books (things she loves, and also her work, and disability, with and without the sexy parts. There’s even a full transcript for people who can’t or don’t want to listen.

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