Sex is not just for normals

Contraception is always a difficult issue for women with epilepsy – some hormonal pills can make some anti-convulsants less effective and vice versa; fiddling with your hormones could prompt a fit; condoms are not 100% reliable; but an unplanned pregnancy is a dumb idea too!

After being fitted for a diaphragm and not having the courage to try it out, I opted for the coil. I didn’t realise that there were 2 types until I went to the GP. The IUS has a negligible hormone release so it can lighten periods as well as prevent pregnancy; the IUD is copper which basically kills sperm. She recommended the IUS because the IUD side effect is heavy bleeding which most women seek to avoid.

I was just about to sign off on this when it occurred to me just to query whether the tiny amount of hormone would interfere with my medication – this was something that she hadn’t considered – no she said but there was a small risk of a fit at the implanting of the IUS. But it’s just small so don’t worry….Any epilepsy associated risks with the IUD? She said no but who wants heavy bleeding…I went for the IUD. Even a small risk at the insertion of the IUS coil was too great a gamble. My life as a normal would be derailed by that sort of flippancy.

But this is just the functional part of sex rather than the sensual or fun. What of our recreational sex lives? I’m not sure that society thinks women with health conditions should or do shag. Maybe we should concentrate on coping with the pleasures of maintaining a normal life. I find it interesting that an argument for prostitution is that it provides a necessary service for disabled men to have the sex that they are entitled to – but obviously denied due to to their condition. Nobody ever talks about the rights of women with health problems to have access to a gigolo. Why don’t the advocates for the sex industry use us as a powerful argument for their legitimacy? Maybe we want to express our right to perform a blow job which is denied to us by regular men because they don’t like the thought of a woman with epilepsy potentially having a fit and biting off their penis.

For every woman confidence is a big part of finding a mate and entering a relationship. If you have to bear the stigma of epilepsy then it can be difficult to admit. It’s almost as though you feel like you’re letting the other person down – fraudulently leading them to believe you are a normal when actually a special. Their dreams of blow jobs and sex on tap fading with your crushing disclosure. We’ve got to a point where we trust them enough to accept us as a sensual person but ironically our double life can damage their trust.

We can’t win. Our doctors medicate our sex life and frighten us out of our sexuality to prevent a range of side effects; but potential mates fear our bodies anyway.

I demand my right to reciprocal oral sex – and all sex tbh – free of charge and without discrimination.

How about you?

We work in the shadows

Our consultants are like managers seeking to create a safer working environment for their front line staff – but more effective than the HR director or occupational therapist. It is interesting that in the modern workplace there is such an emphasis on tick-boxing for health problems or disability. I find it dis-empowering and worrying.

Psychologically I can’t tick the disabled box – I probably should for their inclusive stats – and I don’t want to declare a health problem. We have all experienced that moment when someone finds out that you have a condition and they don’t really treat you the same way again. It’s not even that they want to be more accommodating – make life a bit easier. Maybe it’s my interpretation – but I feel that they use it as a way to explain your behaviour, change your identity for you, even define your work ethic.

You are made to feel unreliable – that your capability will always be dictated by this unseen illness especially as it’s something that affects the brain – the most revered part of the body. ‘They made that decision because their brain doesn’t function properly – keep smiling so we don’t get accused of discrimination but just make sure that we take her suggestions less seriously – double check her work’. This is why I present myself as a normal – judge me as the person that you see or at least think you know. If I’m late in then assume it’s traffic on the road rather than a physical weakness.

It’s difficult for normals to understand that for some of us the act of getting up in the morning; travelling to work on time; and doing a full day of tiring stressful work, whilst being super professional, is a monumental achievement. Reaching the equivalent performance target as the rest of the team requires ten times as much commitment and courage to face the day. Nevertheless those of you who are out and proud face unconscious bias, which swings from underestimation of our talents to over-protective HR policies undermining those gifts.

A good colleague of mine, who has mental health problems that occasionally derail her considerable professional gifts, noticed a gap in the organisation structure – no one was really batting for employees with chronic health conditions or disabilities. There were the standard legal HR policies – anti-discrimination, risk assessments etc – but no advocate for the specials. She suggested this role and it was welcomed by the hierarchy, which was really positive and a great press release (the cynic in me says). I do commend her as she has put her own problems out there for scrutiny – but she has identified herself as potentially ‘unreliable’ – the common perception that mental illness is never really cured. Now, if she’s late into the office it’s because she’s on a low, rather than the reality of her teenager refusing to go to school and missing the bus.

Part of me is a bit concerned though in the wider sense – any dealings with her automatically put someone in the special category, they will be seen as vulnerable and needing ‘support’, particularly if it’s a hidden disability that was previously unknown by others. She is a feisty person and if she did see an injustice then she would fight someone’s corner to rectify the situation. But if you are trying to pass through life as a normal then sometimes we are happy to put up with inconveniences or difficulties to assimilate into mainstream society. In trying to challenge and remove unfortunate labels she has got a new shiny ID badge – but so will the people she endeavours to support whether they want it or not.

I don’t want a well-meaning advocate to expose my weaknesses – I don’t want the awful early morning meetings rearranged to suit my body clock; I don’t want high profile projects shared or delegated to relieve the stress on me; and I really don’t want them to cut me any slack when I under-perform because I’m feeling a bit funny.

Other people might feel differently as discrimination is a daily reality – for some people inclusion into the workplace means an honest conversation with HR or ticking the diversity boxes.

But for those of use who work in the shadows we really don’t want that light to shine on us.