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Dying Matters Awareness Week

In amongst all of the practical and emotional conversations which need to be had in hospices, thinking about sex, relationships and intimacy might fall down our list of priorities. But for many people intimacy plays an important role throughout their lives, and it can be difficult to know how or if that can continue when patients are diagnosed with a life limiting condition.

“Sexuality is more than just sex,” says Andrew Lowden, Operational Wellbeing Lead at ellenor. “When you talk about sex and intimacy, most people immediately think about sexual intercourse. But being intimate can also be holding hands or waking up in the morning and just lying in bed with someone. Just because you have a life limiting illness, it doesn’t mean that that part of your life gets shut off.”

Plenty of research has highlighted the numerous physical, emotional and social benefits of sex and intimacy. They can make us feel closer with partners, boost our self-esteem, improve sleep and, for some people, can even provide a temporary distraction from illness.

“There are some genuine scientific benefits to sexual release,” explains Andy. “It reduces stress, it reduces anxiety, it reduces depression. Sex and intimacy can be used as a wellbeing tool to look after ourselves.”

It’s important not to dismiss the ways that sex, relationships and intimacy can be affected by a life-limiting condition and the move towards hospice care. Symptoms like fatigue, breathlessness, pain, nausea and vomiting as well as mobility challenges can not only make sex and intimacy physically more difficult, but also make it challenging to get into the right headspace to want to be close with another person. Seeing your body change as a result of surgery or treatment and adjusting to a new environment or new health needs is stressful, and your confidence and desire for sex and intimacy may  be affected as a result.

Relationships and friendships can also change after someone receives a diagnosis of a life limiting condition. Partners in particular may find themselves suddenly thrust into a new role as a carer, rather than being a romantic or sexual partner. Even things like one partner moving out of a shared bed because of their illness can impact a couple’s connection. It can be helpful to discuss the strains that a life-limiting illness may have on your relationships and speak to the people involved in your care about how to maintain intimacy.

“At ellenor what we're looking to do is say, ‘Carry on being John's wife. We will help you to look after the care aspect so that you can carry on doing the things with John that you've done as his wife,’” says Andy.

For hospices it can sometimes be difficult to know how to approach intimacy within their services which can also make patients unsure about whether it’s okay to ask about. Though staff and patients may be comfortable with other deeply personal aspects of care, many people still consider sex and intimacy taboo and uncomfortable subjects.

But if sex, relationships and intimacy are important to you and are affected by your condition or care, start a conversation about it, however works for you. You might choose to first discuss it with a partner and ask them to pass on the message to staff, or you might decide to chat to a staff member you feel particularly comfortable with. You might prefer to write a note, or even ask them to read this article!

Though someone can face a number of new challenges when facing a life limiting condition, it doesn’t mean they should have to give up on sex, relationships or intimacy if they don’t want to. Here are some things to consider:

Think about what intimacy means for you

“Change can be tough to cope with, but it’s also an opportunity to explore new ways to experience intimacy and closeness. Though some people in hospice care do want to continue enjoying sex or masturbation, others might be more interested in exploring other kinds of touch or companionship, like cuddling or spending time with someone” says Andy.

“Talking about your feelings or about the things that are important to you with someone else can make you feel closer. Doing things together like going out for a meal or watching a favourite movie are all under the realms of intimacy.”

Keep doing the things that make you feel like you

Taking the time to focus on yourself can boost your confidence and self-esteem, which can have the knock-on effect of improving your relationships and intimacy with other people.  Andy says “If you’re someone who has always got up and done your makeup and your hair, don't stop doing that just because you've been given a terminal diagnosis. That's what makes you, you.”

Maintaining any routines you might have as a couple like mid-week date nights or watching films together at the weekend, even if you have to adapt those routines around care, can help to give a sense of normality and ensure that there are regular times to just focus on one another.

It’s okay to need help

Lube, sex toys, extra pillows and different positions are just some of the tools we can use to make sex easier and more enjoyable. There’s no shame in asking your partner or the staff caring for you to help make sex and intimacy work; it’s just another aspect of your care.

If you’re at risk of being exposed to sexually transmitted infections, or if you want or need to prevent pregnancy, don’t forget to discuss contraception and barrier methods like condoms with your partner and those looking after your care.

Ask for privacy

“Make sure that throughout your day there is time for privacy,” suggests Andy “That could include asking either to have a private room or a larger bed or setting aside some uninterrupted time with a partner, or just by yourself.”

It can be difficult to find private moments when staff need to come in and out to deliver care, but asking for an undisturbed couple of hours, or for a more private space can make intimate moments feel more comfortable and discreet.

“It's getting that balance between medical care and emotional care,” says Andy. “Let’s be open and honest about it.”

Hospice care already comes with a great number of perceived taboos, which, as a society, we don’t feel comfortable talking about.  Sex and intimacy doesn’t need to be one of those as it forms such a natural part of human life, so don’t be afraid to talk openly about it if it is something that matters to you.

“If you’re living with a life limiting illness or caring for someone, we’re here with practical and clinical information, and emotional support.  This is all free of charge, and can be accessed by calling 01474 320007, Monday to Friday, between 0900 – 1700.”