When Kate Allatt suffered a huge brainstem stroke at 39, medics gave her a 20 per cent chance of any future quality of life and her family was given the agonising choice of turning off her life support.
The mother-of-three from Poynton, who used to run 70 miles a week, was diagnosed with Locked-in Syndrome (LIS), a rare nightmarish condition which leaves the victim’s brain still alert but their body unable to move.
Against all odds, and after relentless determination, less than a year later Kate had recovered sufficiently to walk out of hospital by herself, and was able to do what she wanted more than anything – to hug her children again.
But when her marriage broke down, Kate, now 50, found herself thrust into yet another alien situation – the world of dating, after a life-changing brain injury. It threw up a whole range of dilemmas, from when to tell a potential suitor about her stroke, to how to affects things in the bedroom.
After reaching out to other women in her situation, she was shocked by how many stroke survivors replied recounting their negative sexual experiences. One made the shocking confession that her husband likened intercourse with her to ‘having sex with a dead body’.
Having already become a global stroke advocate and inspirational speaker around the subject, as well as a rehabilitation consultant for GripAble and Caremark Rotherham, former digital marketing professional Kate is now calling for more open discussion about the issue.
Here she shares her personal experience with FEMAIL, and why she firmly believes we need to tackle the taboo of sex after young stroke.
Mother-of-three Kate Allatt, who used to run 70 miles a week, was diagnosed with Locked-in Syndrome (LIS), a rare nightmarish condition which leaves the victim’s brain still alert but their body unable to move
Medics gave Kate a 20 per cent chance of any future quality of life and her family was given the agonising choice of turning off her life support
In 2010, whilst married to my former husband, I suffered a catastrophic stroke (a blood clot on my brain stem) and after waking from a coma I was diagnosed with Locked-in Syndrome (LIS) at 39.
LIS is a rare condition where you can think, feel, see and hear normally, but move absolutely nothing below your eyelids. Think rather like Stephen Hawking was, or think ‘buried alive’ and you’ll get the idea.
Statistically, according to doctors, my odds of surviving with any perceived quality of life was two out of 10 and my family were given a choice to turn my life support machine off. They thought I was in a vegetative state, I couldn’t move a muscle. It was so scary. It took two weeks for me to successfully communicate to my family and friends that I was mentally alert.
Incidentally, I didn’t realise that 100,000 people have a type of stroke each year and over a third of those happen to under-60-year-olds.
Less than a year later, following relentless determined effort and against all medical expectations or statistics, I’d recovered sufficiently to walk out of hospital myself.
Kate, pictured with her daughter before she suffered the stroke, said she didn’t realise that 100,000 people have a type of stroke each year and over a third of those happen to under-60-year-olds
Following relentless determined effort and against all medical expectations or statistics, a year after her stroke Kate had recovered sufficiently to walk out of hospital herself
Kate (pictured in an image from 2010) believes she needs to ‘beat the drum’ for people who can’t do it themselves
Not only that, I did hug my young children, then aged 11, nine and six, again, run again, eat again, and became a global young stroke advocate and campaigner, an internationally published author, and I and now deliver resiliency speeches worldwide.
WHAT IS LOCKED-IN SYNDROME?
Locked-in syndrome is a rare brain disorder that causes complete paralysis of all voluntary muscles except the ones that control eye movements.
Sufferers are conscious but cannot speak or move. Their cognitive function is usually affected.
Locked-in syndrome is caused by damage to the brainstem that contains nerves that transmit information to other parts of the body.
Such damage usually occurs due to a lack of blood flow or bleeding following trauma.
Patients are unable to chew, swallow, speak or move, aside from their eyes, however, they can see and hear.
Most sufferers are bedridden and dependent on their carers.
Treatment focuses on relieving the underlying disorder, such as bleeding, if possible.
Patients may need tubes to help them breathe.
Small tubes are also inserted in their stomachs for eating and drinking.
Sufferers can be taught to communicate via their eyes.
Source: National Organization for Rare Disorders
However, just when I thought I’d conquered all my post-stroke challenges I realised I hadn’t. My marriage was irrevocably broken.
It wasn’t that we’d gone from lovers to him being my caregiver, because I actually feel he shirked those duties, which annoyed me at the time but it made me fight even harder and quicker to improve and self-manage my personal care.
Interestingly, I’ve since discovered that, statistically, there is a much higher chance of divorce after brain injury than couples in the ‘normal’ population. So I am a ‘normal’ statistic after all!
When I became emotionally strong enough, I found myself thrust into the unfamiliar online dating world.
The whole concept totally petrified me given it had been 30 years since I’d last dated a guy I’d met in a bar over a pint at 19.
Although, the advantages of online dating meant I could hide my abnormalities, as I saw them.
I used to agonise at what point I would drop the ‘S’ bomb; in my flirty texts? Straight away? A few texts in? When you progress to a phone conversation? Do I declare my stroke on the first physical date when they see my draggy leg? Or do I take the risk of them seeing me, being deflated and judging that ‘I was too good to be true’.
I avoided speaking on WhatsApp before I met one guy because I was very aware that my face didn’t match my voice, and I couldn’t bear hearing that surprise with an air of disappointment in their voice.
But if I didn’t declare my stroke before meeting a bloke, was I being dishonest?
To my surprise there was a lot of genuine interest, from good-looking guys.
With some, I even progressed from endless ‘safe’ texting (and sometimes sexting) to meeting potential suitors and even kissing guys.
Kate fought long and hard to learn how to communicate again – to gain control of her body and life again
Kate, pictured with her trainer on a run, was determined to start running again, having done 70 miles a week before her stroke
Kate is now a global stroke advocate and inspirational speaker around the subject, as well as a rehabilitation consultant for GripAble and Caremark Rotherham. Pictured left with Boris Johnson
But I quickly realised I had another far bigger problem to overcome in my quest to find a new man – my urge incontinence, which had been exacerbated by my stroke.
Having only experienced married ‘cheek pecks’ in recent years, I discovered to my horror that my impulse to wee was triggered when I kissed someone I was sexually attracted to.
Struggling to find any medical guidance or support, I set about researching sex after young stroke issues and discovered there is a huge taboo – not just for stroke survivors I might add, but support for their partners too. I’ve even toyed with the idea of pitching a new TV special idea to the Naked Attraction producers – Disabled People Want Sex Too.
In my ‘tackle-things-head-on’ style, I decided to ask all my closest stroke Facebook groups their views on sex after stroke – and I felt like I’d unleashed a gagged beast!
Replies included: ‘My husband says it’s like having sex with a dead body’; ‘I can’t orgasm now’; ‘I was prescribed Viagra. Why is every issue treated with medicine?’ ‘I’ve always felt I was some sort of unlovable freak’ and ‘I’m addicted to Pornhub’.
Another said they don’t want sex anymore, while one admitted they found penetrative sex painful.
Kate was shocked to discover the taboo surrounding sex after a stroke, after reaching out to women like her when she started dating
But there were some encouraging stories; one was worried they couldn’t kiss, but their partner was very understanding, while another said their boyfriend strokes their weakened arm which she finds comforting. One even said their sex life is now ‘better than it ever was’.
The evidence speaks for itself; sex after stroke is normal and it seems many issues need discussing openly. Furthermore, I believe we need to improve the training and confidence of medical professionals to discuss sex after stroke with survivors and their partners.
The conversations need to become as normal as chatting about returning to work or putting up handrails in your home. Perhaps we need a new profession? Brain injury sexperts?
Whatever the solution, may I suggest we don’t deliver the ‘discussing-sex-with-a-stroke-survivor’ training module on the Friday afternoon graveyard shift, if indeed it even exists?
Kate believes there needs to be more training within the medical profession to help stroke survivors enjoy a normal sex life
We need encouragement, better advice, more signposting, skills, knowledge and understanding about sex after stroke. Above all, we need openness to smash this taboo.
As for me, I’ve used lockdown to improve my pelvic floor. I’ve just invested in the NHS Squeezy app which has really helped my rehabilitation stay on track. I’m also exploring vaginal electronic stimulation therapies which I’m told could even help me enjoy better sex.
So, as we prepare to leave lockdown, I’m truly excited to rediscover fun, honest companionship and the joy of sex once my freedom is, once again, unlocked.
For more information about Kate, visit her website or follow her on social media @KateAllatt. Kate’s book, Running Free: Breaking Out Of Locked-In Syndrome, is available to buy on Amazon.