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butyoudontlooksick.com • View topic - queer (LGBT) relationships and chronic pain- possibly NSFW

Here's the problem I'm having, and I'm going to be really frank about it because so far subtly seems to do nothing but make things even more confusing.

So if discussions of queer sexuality freak you out, that's totally cool and you don't have to read any further.

I feel like this is the only community I belong to where I might be able to get some answers for this.

Mods please let me know if I've crossed some line here: I am a 21 year old self-identified butch dyke and I have chronic pain.

I don't know how to have sex anymore.

I can't do the things I used to be able to do, and virtually nothing feels good to me anymore.

All the resources I've looked for online so far have assumed the following things: a) that the chronic pain sufferer is female b) that she's in a relationship with a male c) they have penetrative sex.

I'm sure that this is the case for many people with chronic illnesses, but it has absolutely nothing to do with my situation.

Really, it couldn't be any different, and sometimes it feels like the suggestions they make come from a totally alien world.

Doctors don't get it.

Even other queers don't seem to get it.

And my girlfriend is starting to loose patience with it, as am I. Has anybody else faced this issue?

Is there some online or in person community that I can go to for support?

Books to read? I live near Northampton, MA so I feel like if there's a convention of chronically ill butches it must be around these parts somewhere.

More broadly, this to me is opening up a lot of issues about gender and chronic illness, and the way that women with chronic illness are depicted in the very resources that are supposed to help and empower us.

I'm just interested to know what you're experiences are with sex and chronic illness/pain, regardless of your gender and sexuality.

It's a totally different world to me but I feel like it's one that I've got to start navigating, or else I and my relationship (2 years old in a month) are going to really seriously suffer. Thanks in advance for your help and understanding.

Hey, I know it took a lot of courage to write your post.

I bet this is a problem which is more pervasive than you think.

I don't have a lot of specific advice, other than maybe this: remember that sexuality is primarily brain induced, not necessarily body driven.

That means we can have some control over how we feel and how we express ourselves.

It's often not what you "do" but rather how you feel about it. This might be the time for some serious creativity.

You might want to look at everything from your "play" environment to anything gentle and sensual that you and your partner can add to your experience.

I'm sure there are lots of books on how to do this.

Do you have a GBLT bookstore where you live?

If not, I'm sure you can search online. I would not want chronic pain to get in the way of any relationship.

I'm sure there are a myriad of potential solutions for you both, and it will start by your both being open to new ideas, which it sounds like you are.

I'm not sure how helpful my general ideas are, but I hope you will be pointed in the right direction to find what you are looking for.

Here in Atlanta, Charis bookstore and Outwrite are two examples of good places to find helpful literature.

Low on spoons, so brief reply.

Get yourself a copy of this book.

It has no gender or sexuality bias I've been able to detect, and was a big help to me in retraining my brain in what sex is.

I am a little reluctant to reply given that I am heterosexual and I know so little about your medical situation.

But your post got me brainstorming so I thought I thought I might as well.

Please forgive me for my ignorance. Sit in a hot tub naked together (If you can afford it, splurge on one of those hotel rooms that have tubs right in the room.) Have your partner learn belly dancing Study Reiki together as a way to connect without even touching Study Tantra;

There's so much about it that isn't physical Read, watch, make up your own erotic stories together Get some good scented candles or essential oils Be creative with food Tell each other how sexy you are every day Keep up as much as you can what you do to feel sexy about yourself.

Have your partner help you do this.

Having her help you bathe, wash and style your hair, lotion your skin, etc.

Could be turned into something erotic.

Communicate to her how much you love and appreciate her in ways that you are able--a thoughtful gift bought online, an unexpected love note tucked into her bag or under her pillow, treating her to a day at the spa so that she can let go of some of the stress she's experiencing about your illness.

Know each other's "love language." I've heard that The Five Love Languages by Gary Chapman is pretty good.

I'm sure it's very sexist in some ways.

But I imagine that the idea that we express love and need love in a variety of ways is pretty universal.

Pray/meditate together.

It can be very intimate.

Enjoy foot rubs, back scratches, scalp massages as you are able.

There are lots of resources out there on how to give good massages. Ok, that's the end of my brainstorm.

Allow yourselves to mourn your previous sex life.

It's a significant loss.

With any loss, part of being able to move on involves allowing ourselves to feel the grief of the loss.

Jarla you have some amazing advice!!!! Personally I'm femme but it does bug me how many relationship-ish things are more heterosexual related.

Our relationships are very similar, yes but they are also different. My girlfriend and I used to cuddle and watch a movie...she had some massage oil too but I was allergic to it LOL so that put a damper on it. My classic Spoonie relationship moment took place in an elevator.

We were kissing (it was a six floor descent) and she could taste my Prevacid SoluTab (Strawberry).

If that's not sexy, I don't know what is. Have you checked out your local GLBT center????

I'm sure there are other GLBT people who deal with chronic pain in your area and that would be a good place to start. Oh and here too as there are quite a few of us who have alternate sexualities and gender expression. Have you talked to your partner about this yet????

Thanks very much for all your advice.

I have ordered the disability guide to sex- I'd been meaning to do that for a while but I was kind of skeptical.

But then I found the whole thing on google books and decided I definitely need a copy!

I will also be checking out the gay store here to see if they have any good books on the subject- they're mostly a novelties store, but once in a while you find a good book there too.

I was actually just in Atlanta, sort of...wish I were back there now, I bet the weather is much better there than here! Jarla, those suggestions are a really good starting point.

Thanks very much for them.

We actually do go to hot tubs quite frequently;

There's a place right down the street and my friend works there so we get in for free.

I'm thinking we need to go there more often, like weekly, because when we do get a chance things improve drastically, sexually and otherwise. I think the other thing that I'm dealing with is that I also have sensory integration dysfunction, and sex has always been kind of difficult for me- I generally don't enjoy being touched in my daily life, which makes sex really intense and sometimes not worth it.

When I had been having it regularly for a while, I got used to it and enjoyed it;

Now that I've gotten out of the habit I'm back to really dreading human touch.

So it's also about getting back into that again. Thanks again for all the support.

This whole thing was very strange for me as I'm normally a very private person and never talk about my sex life, especially on the internet.

Thanks for being great.

Hi Hunter, Do you think that PTSD counseling about your "dreading human touch" situation might help? I agree that Jarla's suggestions are really encouraging for sensitivity in a relationship.

Keeping and maintaining and sustaining a relationship is difficult enough during good health times, but if you're "under the weather" it's even more frustrating. Maybe there is a way that Lyme specialist conferences would be able to address your specific concerns.

At many Multiple Sclerosis conferences I have been to, Sexual Issues ( of all perspectives ) are almost always part of the workshop choices.

Chronic conditions/ Illnesses DO affect our minds, bodies, and spirits, in a really integrated way. If you live in a well-represented region that supports your gender issues, perhaps your local politicians would be able to help you find some of the information you're needing.

How frustrating it must be to have Lyme disease!~ Friends of mine have it, and my husbands has it.

The "co-existing" or whatever it's called aspect of the spirochete in Lyme disease ( a secondary illness?

) is something I have just heard about, and I'm not sure I'm describing it accurately.

All I know is that having Lyme is a really difficult condition.

I live a few hours away from where you live, so my area is really "Lyme Tick Country", too. I hope that you'll find support on this forum, because there are a lot of voices of experience here.

I'm not sure about PTSD counselling, just because touch feels really strange to me.

It's not that I've been traumatized or anything, it just feels weird and tends to stress me out until I get used to it again.

Since sex involves a lot of touching it's something I have to consciously work on.

But I've had sensory integration therapy, like when I was a kid, so I can use some of those techniques.

I think it's about time to consciously start on that again. I'll look for info on lyme conferences.

I don't know of any but I live within a couple of hours of where it was discovered, so I feel like there must be something...thanks for the suggestions!

I have SID as well...it means that our brains have difficulty processing whatever sensory input goes into it. I understand how that could make sex difficult...maybe going over the old therapy would help.

I am so sorry to have written so inadequately! I really didn't mean to suggest you had been abused or something although I'm re-reading what I wrote now, and thinking that I sounded like that was my thought Sorry!

I don't know much about sensory integration as a condition.

Does it mean "tactile defensive" or something like that? I live in the area where Lyme is something almost everyone has or their pet has or their friends have so it's really rampant around here. I hope that Lyme Conferences will help you find out info specific to your situation.

There HAVE to be people exactly in your profile with Lyme in New England.

I wonder, if Multiple Sclerosis has sexual workshops, Lyme conferences, must, too.

Any time a person has a physical exhaustion, physical sensorial, cognitive disability or vulnerability, it's sure to affect the sexual intimacy or general social intimacy a person experiences, don't you agree?

*hugs* Other people have already given some good advice.

I'm afraid I don't have much more to offer except sympathy.

I'm a polyamorous bisexual, and I've found since my fibromyalgia diagnosis that sex with another woman can be much more difficult than with a guy.

With a guy, I can just lay there on a bad day, not do much, and it's still satisfying for both of us...

Whereas if I'm with a woman...

Such is not the case. I don't have SID, though, but I can definitely see how that would be a major contributing factor.

Good for you on getting the disability and sex book.

I hope you'll get as much benefit from it as I did.

It really boosted my *cough* confidence re my sexuality.

It has quite a lot on dealing with chronic pain, and as Nath said, it's not sexuality specific - but it does have good general stuff regarding dealing with pain and how it affects your sexuality.

I found that me being a "stone dyke" (put bluntly, I don't like people touching me, so I'm the "do-er") is a god-sent!!

I don't know if this helps you at all. I love making love to my partner, and I can get more enjoyment out of seeing her happy than I do if she were to try to touch me when I don't want her to. I agree with the person before who suggested studying reiki together.

I'm a Reiki II practitioner and my partner does energy work of a different kind, and we both find this incredibly satisfying!




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