One Year! 🎉

Where Emma talks intimacy and sex.

This letter is officially one-year-old! I can’t believe a whole year has passed since I tentatively typed these words and tweeted this:

WhoStoleMyDopamine @dopaminetheft

Is it wise to start my twitter life with an empty wine rack?

I didn’t know that I would end up as part of a loving, funny and supportive community. I didn’t know how pissed off I actually was about having Parkinson’s and I certainly didn’t anticipate touching so many people.

In fact, this anniversary is nothing to do with me and all to do with you. None of these wild ramblings would exist without your comments, inspiration and experiences.

Thank you.

Anyway, let’s talk about sex.

We need to clarify that: people with chronic illness and/or disabilities have sex. Yup, the same icky, funny, loving, sexy, noisy, illicit, tender, crazy, joyful stuff that everyone else enjoys. We also do all the other things; masturbate, fantasize, have crushes, have times of celibacy, kiss, hug and debate whether chocolate is better…

The difficulty is that having a chronic illness can mean you receive less intimacy than you’d like and need.

Imagine all your usual life demands, and admit it, you probably don’t have enough sex because you are so bloody knackered after a normal week of work, family, friends, the world. Then add pain, fatigue (the clinical sort) and some serious questions as to whether you can even perform…well, it’s a shit show of nothing. But it’s not just one day/week/month this is a chronic position that leads to long-term. If you are in a relationship then this adds untold strain and if you are single it makes hooking up a massive challenge.

There is one persistent myth which causes people with chronic illness* a whole load of trouble. Namely, the word "sex" means penetration. I am not about to launch into a rant about the myriad of ways to pleasure yourself and each other, I’m sure you can figure those bits out for yourself. But this idea that penetrative sex is the be-all and end-all is a major stumbling block to intimacy.

We are talking about sex as an expression of love, desire, and intimacy not so much as a reproductive function.

*I do acknowledge this isn’t just an issue for chronic illness & disability!

I see when this issue is discussed a lot of responsibility is put on patients. Now on one hand this is absolutely appropriate - after all, only you can communicate within your relationship to answer your needs. A quick google reveals there are a million advice-style columns out there filled with good stuff.

What concerns me is the broader picture. Many doctors don’t even discuss sex, many won’t and many don’t consider it an important area for chronic illness. I don’t blame the medical profession, I think it is symptomatic of society’s general attitude.

It is estimated that 15 million people in England (I couldn’t find accurate figures for the UK as a whole) have some form of chronic illness. I bet a lot of these people are definitely having sex. Our society is ill-suited to entertain the notion that people of all shapes, sizes, inclinations, ages and capacities have sex.

It is another area where people with chronic illness and disabilities are isolated. There is an undertone of undeserving, blame and judgement. Just sit down and be quiet becomes sit down and for god’s sake don’t dare be sexy. You are expected not to make everyone who is ‘normal’ uncomfortable.

I am the first to admit sex is hard work with Parkinson’s and I doubt it’s Mills & Boon sexy. But it is often hilarious and caring and hell, it’s something which is ours, not the disease or the rest of the world. And I suppose that’s the important part…for a short time you and your partner are focused just on you, nothing else really matters.

How do we change the idea that we don’t deserve sex or to be sexy? I think we need to tell doctors that it’s important. We all know sex makes us feel good, surely that is something in the treatment arsenal worth having?

And we need to change society’s limited attitudes by talking about it. Talk about not only the challenges but the good bits! Let’s lift each other by pointing out how attractive, beautiful and fabulous we all are. Because those virtues are bugger all to do with the barbie doll ideal and all to do with the courage, joy and uniqueness of us all…of you!

With love

Emma xx