By Dr Kate Allatt

Stroke survivor, global stroke advocate, inspirational leadership webinar speaker, rehabilitation consultant for GripAble and Wiltshire Farm Foods, author of ‘Running Free: Breaking Out Of Locked In Syndrome’ (2011 Amazon) @KateAllatt

 

In 2010, whilst married to my former husband, I suffered a huge brainstem stroke and was diagnosed with Locked In Syndrome (LIS) at thirty nine years of age.  A later following tremendous effort I’d recovered sufficiently to walk out of hospital, hug my young kids and even run again. Just when I thought I’d conquered my challenges I realised the physical and emotional challenges of sex was still to be resolved in putting my broken self back together.

Furthermore, through my global stroke charitable advocacy and my resiliency NHS leadership webinars, it became very apparent there was a huge taboo around sex after stroke. This also seemed more prevalent amongst allied health professionals (AHP’s) than stroke survivors, although the emotions of the stroke survivor are not the only ones to consider.

I’ve often pondered if AHP’s actually take-in the ‘Communicating Sex after Stroke’ CPD training? Maybe the module is delivered on the graveyard shift on a Friday afternoon? Perhaps, I should pitch the Naked Attraction producers a new TV special idea: ‘Disabled People Want Sex Too’.

So, in my ‘tackle-things-head-on’ style, I decided to ask all my closed stroke Facebook groups their views on sex after stroke.  OMG, I seemed to have unleashed an otherwise gagged beast!  Here is just a selection:

“My husband says it’s like having sex with a dead body”

“I just jumped back into the saddle. My worry is that my anti-depressants and nerve medication will dimmish my sex drive.  Having sex is a great way to feel normal.”

“I was prescribed Viagra. Why is every issue treated with medicine?”

“I’m addicted to the porn hub”

“I was worried I couldn’t kiss.. but he was so understanding.”

“My boyfriend is so loving and considerate. He accepts me for me.  He even strokes my weakened arm which is comforting.”

“I struggle to tell anyone online ve had a stroke, let alone the thought of getting intimate with someone.”

“My sex is better than it ever was”

“I don’t want sex now.”

“I can’t orgasm now” was sadly a very common comment.

“I worry I might wee myself when I orgasm”

“Sex is different.. you need to experiment with positions and use your imagination”

“No one has ever discussed sex after my stroke. My stroke has taken so much from me.”

“I’ve always felt I was some sort of unlovable freak with physical intimacy.”

“It’s like having virgin sex and requires a lot of patience from your partner and comments about it ‘feels like he’s having sex with a dead body’ are really not helpful or caring.”

“We laugh when having sex, it’s so much fun but I’m lucky with my understanding wife.”

 

The evidence speaks for itself, sex after stroke is normal and needs discussing!  Furthermore, we need to improve the training and confidence of AHP’s to discuss the issue with stroke survivors and their partners.  Talking about sex after stroke must become as normal as chatting about returning to work or putting up handrails in your home.

Here’s a suggestion, don’t deliver the training module in the Friday afternoon slot? We need encouragement, better advice, more signposting, skills, knowledge and understanding. Above all we need openness about sex after stroke.

As for me, I have just invested in the NHS Squeezy app which has really transformed my pelvic floor and could help everyone enjoy better sex too.  (I’m not a real doctor too by the way, it’s an Honorary Doctorate).

Eleven years on from my own devastating stroke and a divorce I’ve actually met a new guy and rediscovered the joy of fun sex!