MS and me

heart on sleeve

One woman’s experience of how her relationship with her husband changed after a diagnosis of MS

A lovely young woman with MS who wishes to remain anonymous wrote this amazing post for the World MS Day blog. We applaud her bravery in telling us her story and wish her all the best!

Written by a very special anonymous contributor

This blog is entering slightly scary new territory for me… In the past, I’ve been afraid to write about my experience of being diagnosed with MS and the subsequent breakdown of my marriage. I do know that my situation was very extreme, and in hindsight it’s clear how my diagnosis was the catalyst for my relationship to spiral into a nightmare of physical, emotional and sexual abuse. But I have come to understand, sadly, that aspects of what I went through are more common than I ever imagined. I don’t want other people to live through what I experienced believing that it is normal, justifiable or understandable. It’s not. So I’ve decided to talk about it… However, I promise my story is more positive than it may initially sound!

It’s taken me a few years to readjust and many months of intense counselling, but I have come through the whole experience a stronger, sexier and more confident woman. And I’m now dating some incredibly hot, lovely men!

I was finally diagnosed with MS five years ago, aged 28. At the point of diagnosis I was already using a wheelchair, I’d had to sell my dance school and I was in the middle of a massive relapse. I was very ill. My ex-husband just couldn’t deal with my diagnosis. He hated illness and disability and the impact it had on our lives. He was incredibly angry with me for being ill and he refused to get counselling to help him come to terms with it. He became alcoholic and started taking a lot of drugs. He had suffered with depression all his life, and he attempted suicide twice in the 10 months between my diagnosis and when we split up.

He would often get drunk and shout at me about how impossible it was to find me sexually attractive because I was physically disabled. He said that using  catheters to urinate was utterly disgusting. He never wanted to have sex with me when he was sober, but he started using sex when drunk as a way to violently beat me up – which he excused as being ‘kinky sex’. And I let it happen because I so desperately wanted him to want to have sex with me, even if it was violent. Sometimes my body just wouldn’t do what he was trying to force me to do, and then he would storm off mid-sex and shout at me. But the following morning he always claimed he didn’t remember anything.

He blamed me for not being as drunk as him, for being self-righteous and for remembering what had happened. He said I wasn’t any fun anymore, and that MS had changed me. He said it was my fault our sex life and relationship was deteriorating. Then he would get drunk again and threaten to cut himself because he was, ‘such a bad person’. So I eventually stopped telling him what he had said and done to me, scared that I would push him to self-harm or kill himself. I thought it was my fault.

Ten months after diagnosis I gave my ex-husband an ultimatum; get professional help, or leave. He left and we got divorced. To my utter confusion, men immediately started asking me out. I didn’t understand it, I’d had months and months of the man I’d loved telling me I was physically repulsive. I eventually went on a couple of dates, but I completely freaked out every time a man went to kiss me or touch me… I realised I needed proper professional help to come to terms with what had happened to me and I took myself off for six months of intensive counselling.

Counselling drew to an end just after my 32nd birthday. And that’s when I met the most incredibly beautiful Ghanaian acrobat who was travelling around the world with a circus…  He didn’t care that I used a mobility scooter, he didn’t care that my legs didn’t work properly, he didn’t care that I have PAs (carers) to help me live my life, he didn’t care that I have to sleep in the afternoons, he didn’t care that I had to self-catheterise, he didn’t care that I had MS, he just made it totally apparent that he really, REALLY fancied me and wanted to have sex with me. And so we went to bed and somehow it didn’t matter that my legs didn’t work properly, he made me feel like I was the sexiest woman in the world and it was amazing!

When I split up with my ex, I thought that maybe, one day, I might meet one special man who could see past the disability and illness to see the ‘real me inside’. To my complete surprise, I have discovered there’s a lot of incredibly attractive, lovely men who simply don’t care that I am disabled and take my illness in their stride. I have amazing men in my life who I describe as, ‘close friends and lovers’. I am starting to believe that my illness is not what defines me. They all say that my personality, my sense of humour, my love of life, my body, my hobbies, my smile, my desire for sexual adventure and my quest to have as much fun as possible, all totally over-ride the fact that I have MS.

Yet recently a lover gently pointed out that I have, ‘a hard protective shell which is very tough to crack’. He totally understands why, I’m very open and honest about my past. But I think the most damaging thing my ex-husband ever said to me about living with MS was, “No one knows what it’s really like. If they knew what it was really like, they’d understand why I can’t cope”. So the barriers went up.

I’ve felt, understandably, like I’ve had to protect myself from getting close to anyone because I’d be rejected when they find out the reality of my life. But I have to change. And I think I’m slowly getting there… I’m allowing men to see what my life is ‘really like’ through long term friendships. And whilst they acknowledge that of course my life is difficult, they say I’m definitely worth it.

So now I need to soften up and let men in, even if that means I may get hurt… It’s scary, but that’s just life. And I want to live my life, not hide away regretting what could have been if I’d been braver… So onwards and upwards. Let’s see what the next chapter brings!