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  • Writer's pictureEmily Ainscough

Do Worry, About Some Things...

So, as I'm sure you are all eagerly anticipating as much as I am, this weekend I will hopefully be meeting up with Nijaz for a roller-coaster of casual, commitment-free but still meaningful sex. (I don't believe that sex is ever really meaningless, at the very least it means you trust somebody with your body, which, if you ask me, means a hell of a lot). Anyway, as I sit now in a bath of fake-tan-stained water, I thought I'd talk to you about some of the things we worry about when approaching a first date (or first meeting in the case of something more casual).

It's totally normal to be worried about things in the lead up to leaving your door for that first encounter. What if they don't like me? What if I don't like them? What if I spill something down myself? What if my credit card gets declined! But, now that I suffer with my episodic disability, there are a bunch more worries to add to the mix. And, although all feelings are valid, I've found it pretty useful to categorize these worries into two lists: worries that need action, and worries that are just feelings to overcome. In short: What to, and what not to, worry about.

What Not to Worry About:

  • Telling them about my condition: This one I have already ticked off the list for Nijaz by telling him before we have even met. (yay me!) For a while, when I first got diagnosed, I wouldn't tell the people I was dating or sleeping with unless an episode actually happened before their eyes. At the time, I did this because I didn't want to face discrimination, I didn't want my sex life to suffer because people were scared of my condition and I didn't want to have to open up to people I was just getting to know about something so personal. But I was wrong. I was actually causing my sex life to suffer, because by not telling people that I was with, I was trusting my body with people that were potentially not the right people to trust it with. I was putting myself in unsafe situations, and leaving my poor dates up shit creak without a paddle if I did suddenly collapse. It wasn't fair to myself and it wasn't fair to them. The truth that I needed to accept is that my body now, has different needs and vulnerabilities, and for that reason there will be fewer people that I am able to trust with it to share a sexual experience. I wasn't empowering myself by not telling people, I was actually doing the opposite.

  • People not finding me attractive: As I've mentioned before in this blog, I have gained a lot of weight with FND, and there are also the muscle spasms, speech slurs and facial tics to add to that image. The blunt truth is that fewer people will find me sexy like this. But that doesn't mean that I am less sexy like this. I don't need to worry about the person I'm meeting finding me attractive, because if they don't, then I don't want them to. They're not the right person for me. My body deserves to only share sexual experiences with people that love, crave, desire, yearn for me completely. As I am.

  • Changing my mind: With FND, episodes of exhaustion, pain or seizures can come on suddenly. Sometimes I find myself worrying about what would happen if half way through a date (!) I suddenly feel these things or change my mind and want to go to bed, put the telly on and cuddle my dog. I have to stop myself. Even without the condition, in sex, on a date, in the middle of a conversation, we always have the power to tap out. There is no need to feel guilty, there is no need to even explain why. For whatever reason, even for no reason, you can always change your mind.

Now, some of the worries I have are legitimate, and require action in order to be quelled. Sometimes we spend so much time worrying about the silly stuff from the first list that we forget to worry about this stuff, so it's important to actively think about things and constantly think of solutions and communicate with the other person/people you are with.

What To Worry About:

  • Communication of Consent: Sometimes my FND causes me to lose my ability to speak entirely. For this reason it is important that before anything physical happens (even kissing, hand holding etc.) I establish with the other person different ways that I can communicate consent and the lack thereof. i.e. tapping twice means yes, tapping once means no. If I am not feeding back constantly with movements/speech (if I seem to zone out or fog over) stop immediately. Basically it is important to create a language for all eventualities, and in case of uncertainty, the default is to stop.

  • Safety: If we are out on a date, how will I get home if I have an episode? Will my date know how to get me home and how do I feel comfortable with them facilitating that? I keep a card in my pocket of the names of people that can come and get me in an emergency if I am not stable enough to be helped into a taxi. Also, do I feel safe trusting this person to keep me safe in a seizure for the time being? What do I need to let them know about this process?

  • Medication: Does any of my medication interfere with cognitive faculties meaning I am not able to genuinely consent. If so, it is not appropriate to have sex under this influence. Is it safe to drink alcohol with this medication? If I go back to theirs, do I have medication on me to take when I will need it? The only medication I take for my FND is pain relief, so I am able to not take it on days in which I hope to have sex to ensure I have my full cognitive faculties and am protecting myself and my body. This is a conversation you should also entertain with your doctor and with yourself!

I think this is my longest blog post yet...and I didn't even have time to tell you all about the conversations I have been having with my exes and another guy I have been talking to online! But I think this post was important, and I hope you find it useful too. The sexiest thing, is feeling safe. Work hard at creating a safe sexual experience every time, to give yourself, your body and the other person/people, the respect we all deserve.

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