Many people rightly consider sex to be an important part of their daily lives, yet in the area of disability sex is rarely talked about.
With the current focus on physical needs, access and daily living aids, it is easy to forget that living with an illness or disability can bring emotional challenges as well. When you acquire a disability, much of your life changes overnight and you may feel you are struggling to cope, but you are not alone.
Disability can impact on many areas of life: relationships, housing, finance, employment, health and social life. Humans generally do not cope very well with change, but with disability these changes often happen all at once, which can be overwhelming. It isn't a sign of weakness if you feel you aren't coping. It purely reflects the amount of changes you are working through.
Prioritising time and energy are major issues for people living with a disability. Time gets taken up with disability-related tasks and sorting out support from Social Services and other organisations. To get what you need you have to be your own advocate, communicate well and be assertive.
How you see yourself and your disability will impact on how you cope with these changes. Being assertive can be hard when you are feeling frustrated, low, anxious, have negative thoughts or low self-esteem. This in turn can impact on intimate relationships.
What about sex?
Feeling low or struggling with body image can make sex and intimacy difficult. There can also be changes in the roles you and your partner have and in ideas about masculinity and femininity.
You may have to work through the loss of dreams and future expectations. If you are single, you have to think about how to contain your disability when you first meet someone so they can get to know the ‘you' beyond the disability.
We are all sexual beings, whether we have a disability, are in a relationship or are single. There are many myths and assumptions around sex and disability, for example that disabled people are asexual (not interested in sex) or are not capable of sex. We are all influenced by these myths and sometimes it's easier to think that we don't have a right to sex any more ... but it just isn't true!
There are things you can do to improve intimacy in your relationship. In fact, re-establishing intimacy and sex can provide comfort and security during this time of change and help to keep your relationship together.
If you're single, sex with yourself is also important for your self-esteem.
How can we re-establish intimacy?
Here are some tips to help you reconnect with yourself and your partner:
* Tell yourself it's OK to be where you are! It took you a while to learn to tie your shoelaces, to learn how to cook or drive, and it will take time to learn how to have and enjoy sex again.
* Learn about your body and find out what feels good. Don't be scared to explore areas of your body that perhaps in the past you neglected: there are many more erogenous zones in our bodies than our genitals, and don't forget your mind and fantasies!
* Once you have a clearer picture, start exploring with your partner. Communication is key: when it comes to intimacy you may need to discuss any pain, fatigue or discomfort which could affect sex. Talk to your partner about what you think is going to work, thinking about your needs and theirs.
* Desire and self-esteem are part of the arousal process. If you are struggling with this, then individual counselling may help to improve your self-esteem and body image. Once you feel more confident, couple counselling or sex therapy can also help to get your sex life back on track.
* Assessments by Occupational Therapists (OT) and Social Services around your Activities of Daily Living (ADLs) should include your sexual needs, but often don't. Many professionals are still reluctant to ask how your disability or illness has affected your sex life. This may be because they feel it isn't in their job description, because they don't know what to do with the information you may give them or because they feel this is an invasion of your privacy. However, sex IS an activity of daily living alongside eating, washing and dressing etc. If you feel you need emotional support, sexual aids or sexual advice, please ask your OT or Social Worker to include your sexual needs in your assessment or to refer you to an organisation who can assist you. It is also worth asking whether sexual aids or emotional support can be included in your Direct Payments or Individual Budget.
Intimate relationships are an important part of finding satisfaction and happiness in life, but finding or keeping a relationship can seem like a huge mountain to climb when you are not feeling great about yourself.
Support is out there from your peers and from professionals who have disability knowledge and experience. Most people find it beneficial to join a group of people with disabilities where they can learn from each other, or to talk to a professional who understands what living with illness and disability is like.
There are counsellors, sex therapists and organisations that specialise in providing support for people with physical disabilities. There are some who specialise in sexual support for people with disabilities as well.
Though finding time to re-establish intimacy with yourself or your partner may seem like another to-do item zapping your time and energy, the benefits far outweigh the cost. It may strengthen your relationship, help you focus on the things you CAN do and improve your self-worth.
About the author: Melani Halacre is a fully qualified Counsellor located in Lichfield, Staffordshire. Besides general counselling, Melani specialises in working with clients with physical disability and illness.
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