Disability and sexuality … according to the medical system.
Recently I wrote a piece about Eroticon, and how it reawakens my sexuality. This piece is in some ways an accompaniment to that, this piece is how my sexuality got pummelled, pulverised, and ultimately put away. Then I saw a bunch of tweets today (for everyone’s mental health I won’t include them), and yet again I started getting riled up about disability and sexuality and how it’s not taken seriously.
Doctors have important jobs, I will in no way dispute that. That only reason I can post blog post upon blog post nowadays is that doctors have finally listened to me and have me on all sorts of medication to keep my pain tolerable – an important distinction. I am always in some type of pain, there will always be pain running through my nerves (today my back is taking the lead), but that’s fine. A few months ago it robbed me of every thought. That, unsurprisingly, wasn’t fine. All the pills I take, and all those liquids I sip ensure I’m stable enough to live somewhat.
But, being aware and ‘living’ again is where I get … problematic.
When I was put on amitriptyline I knew that loss of sexual desire could be a side effect, but I didn’t know know. I don’t know why, but my body collects side effects like it collects hospital visits – frequently. Nowadays my medication cocktail has all sorts of unwanted side effects. But, when I tried to come off it, I had to fight. I had to convince my doctors that I had to come off this medication. It didn’t help me fall asleep quicker or impact my pain, it gave me nightmares that I became stuck in, and it eviscerated my sexual desire.
Doctors told me (before I came off it) to try it at a higher dose, and when I refused on account of the nightmares and sex drive loss, they focused on the nightmares. They told me to see a counsellor. I’ve learnt that if you’re already seeing one – as I have been for nearly two years now, they bug you less. When I went back and told them I’d completely lost my sex drive they dismissed it, and told me it’s a known side effect.
There’s knowledge about a side effect, and then there’s treating it.
I did what they hated. I went back again and again and again until they let me taper down and come off it entirely. The medication withdrawals were an absolute nightmare, but I got through them … mostly. I couldn’t start to taper without doctors being away, because at that time I was undiagnosed – coming off medication would be tantamount to going behind their backs into my medical file, and writing my own notes. It’s taken a long year fighting them, but that’s beside the point.
I’ve always been a person with a high sex drive, until amitriptyline. Once I’d come off it, my sex drive came back slowly, until it took a sudden nosedive thanks to CRPS. I’m getting it back nowadays, but there’s a humongous gap within my medical care missing.
Sex. Sexy sex, sex.
No doctor has asked me how my sex life is going, or how it’s been impacted, or tried to offer advice or suggestions. It doesn’t even enter into their minds that I could be having sex.I’m 24, and my partner accompanies me to every single appointment at the moment. They don’t even consider it – maybe they think I’m in too much pain, to which I would counter that I definitely give it a go – I’m a creative at heart. You should see some of the positions we tried.
But, it’s not just the past year my sex life has been ignored by the medical profession. I have a number of conditions, and I’ve seen a number of specialists and not one (excluding gynaecology, but that’s another post in the making) have spoken to me about sex. Just because I have chronic pain with ailments including sciatica, costochondritis, asthma, CRPS, fibromyalgia doesn’t mean I don’t have a sex life.
No matter how many words my fingers type out to embellish it, my main point is this. I’m outraged. Miffed. Flummoxed. Annoyed. Sad. And so many other mixed emotions I know the NHS is a fickle soul, understaffed, and overused. They’re not prepared for patients like me – in more ways than one. But, disabled patients have a sex drive that’s being systematically ignored by the NHS, our care workers, care providers, family, friends, and physiotherapists. And, if it is brought up in any capacity the professionals’ flounder (I expect some don’t, but I’ve yet to encounter one), they move the subject on to one that suits them.
Ignoring our needs is not creating a ‘care plan’ – especially for those more dependant on others, and/or with more complex needs. Talking about every activity bar sex in physiotherapy isn’t making sure we can function in a way that’s normal for us, and acting surprised when we express a desire for our sexual desires to be taken into account with medication isn’t helping our situation.
Disabled people have sex, get over it. Disabled people have sexual needs, get used to it. Disabled people want sex, get with the times.
Disability and sexuality are intrinsically linked – even if you don’t want to acknowledge it.