In our series on disability, sex and relationships, expert and resident agony aunt Tuppy – who runs Outsiders, a private club for disabled people looking for a relationship – answers your questions. This week, Tuppy looks at how to talk about your disability when you start a relationship if you have a progressive condition.
Dear Aunty Tuppy,
I am a woman in my 30s and I live in Wales. When I was 19 I was diagnosed with a rare progressive condition, which means my health will deteriorate and, in the future, I will need help to do everyday tasks.
As a teenager, and with the hope at the time of finding a wonderful man and settling down to start a family, it came as a terrible shock.
After the bad news, I buried myself in my studies and work; I didn’t want to meet men for fear of being rejected. I eventually started to date, but, with every relationship, once they learned about the doomed life ahead for me, they found an excuse to end our relationship.
The last time I was dumped I was totally heartbroken as he was the man of my dreams. So, I am writing to you in the hope that you can help me cope and move on.
First of all, you need to try to forget about your past relationships, or what lies ahead for you.
Don’t dwell on what you can’t or won’t be able to do, as there will always ways and means around it. When you get to the stage where you can’t do something, you will have PAs to do things for you. With a little advice and careful planning, you will also be able to select PAs who are fun to be with and share at least some of your tastes and values (you can read Disability Horizons’ article on finding the right PA for tips).
Also, chemistry does not discriminate against disability and someday your prince will come. Everyone, whether they are disabled or not, has dating highs and lows until they meet Mr or Miss Right. Rise above it!
Talking about your disability
You should be open with any new partner, but you don’t have to go head first to talking all about your future straight away. When you find another man of your dreams, wait until he feels the same and then start talking about the future. That way you can focus on all the things you will be able to do together, rather than telling him about the ‘doomed life ahead’.
When you do talk about it, make sure you let him express his concerns, talk things through and come up with solutions together. The key thing is that you will still be able to do things, it’s just that you might have to plan or change the way in which you do them. Put him at ease instead of perhaps showing you are also worried and frightening him away. Relax so he feels that big changes are no big deal. They might even end up being fun.
For example, there were writers in the book The Ultimate Guide to Sex and Disability who have said that some people have found that becoming disabled has actually improved their lives as they feel wiser and are more inventive. Non-disabled people just do the ‘old in and out’ when they have sex, but disabled people find ingenious ways to enjoy their bodies and have sex with a partner.
At some point, your partner might end up doing some care for you when the PAs go off duty. Make light of the situation and remember that a lot of these things are perfectly normal. At night he may be required to help with something a bit more personal, such as toileting. Remind him that everyone goes to the toilet. Incontinence is one of those silly taboos that shouldn’t actually be a taboo. Never lose your dignity.
Remember how much you have to offer
Also, remember that all these problems are physical and you are so much more. Your personality, your drive and determination, your ability to contribute to the world, love and be loved are not affected. Don’t sell yourself short, you are so much more than your progressive condition.
Members of Outsiders who have both social and physical impairments are very accepting, so you may like to join the club, if only as a stepping stone.
Go with the flow, take each day as it comes, make the most of life while you can, including enjoying sexual relationships. Knowing this to be true is why we made the Outsiders’ logo strap-line to be ‘living life to the full’.
By Tuppy Owens
Thanks to Emma Buckett and other members of the Outsiders Club who helped me with this article.
Outsiders is a FREE social, peer support and dating club, run by and for socially and physically disabled people. Its members have a wide range of impairments, including visual and hearing impairment.