Relationships and Intimacy
We recognise that when you use a ventilator at home, it’s likely to impact your relationships to some to degree or other, whether with a spouse or partner, children or other members of your family.
We also appreciate that when it comes to intimacy, using HMV may affect how you view yourself and how you feel others may see you, as well as having more practical implications.
We have therefore compiled information and stories offering thoughts and experiences from other users and their carers on how HMV has affected them in this area.
i) Sexual intimacy insights from Chris, an HMV user
The text below is just some thoughts and not meant as a route map for all. Whatever works for you and your partner is all that matters.
You are now using NIV. This may have come as a gradual inevitability or perhaps a shock to the system. It’s worth appreciating that you both you and your partner have probably been through a psychological as well as a physical shock that is going to affect your general lifestyle for a considerable or indefinite time.
Hopefully you are feeling better for this new intervention. So, your thoughts may turn to “sexual intimacy” and why not? If you were sexually active before home ventilation, it’s reasonable to assume that “the equipment” is still in working order after.
However, the “dynamic” of intimacy has now changed. “The elephant in the room” maybe a box that is independently breathing for you so you both have to adapt to its presence.
Anxiety levels in your partner and acceptance of the general situation may be at a different stage to yours. It is common for instance for a partner to routinely watch or listen to you breathing and you not be aware. (They may be the one listening for the alarms rather than you!). So, the prospect of “intimacy” may be independently anxiety-inducing to your partner as they maybe additionally concerned about stressing or breaking you?
For successful events to occur you will participate together so we’d suggest it will be beneficial to chat generally -as often and as much as it takes to reach a comfortable conclusion about what might work for you both rather than “just go for it and see what happens”?
Of course it’s your life, your unique relationship and between you can do whatever you want to make each other happy. You and your partner are learning your new normal together so smile, laugh and enjoy life as much as possible!
ii) Amy on being a wife and carer
Guy’s Condition
Guy has Duchenne Muscular Dystrophy. Over the years his condition has become progressively worse. Originally unsupported in terms of his respiratory health when we first met, he has subsequently had ventilation 24/7 via nasal pillows and now through a tracheostomy.
Guy and I started dating when we 22 and 20, respectively.
We met at university and were friends first for nearly a year. When I say friends, we were best of friends and most people assumed we were dating. I believe Guys carers used to try to persuade him to ask me out and his mum just assumed I was his girlfriend.
It took Guy a while to ask me out and then he did do it over text! I think that’s because it is sadly harder for disabled people to find friends, especially good friends. Guy was scared to ask me to be his girlfriend in case it meant he lost me as a friend.
I think though that is the case for a lot of people when they form that friendship first and our only advice would be to go for it.
But equally, we would suggest building up that friendship first. Telling someone the extent of your disability and the ever-changing nature of a muscle wasting condition is hard, as is navigating it from the other side. A strong friendship is in our opinion the foundation stone for a successful relationship with a disability, although equally we’d argue also for those without a disability.
How people perceive us a couple?
In reality no one has ever really questioned our relationship. We did have a restaurant, which we frequented regularly, ask us what our relationship was – were we brother and sister. Perhaps a question which would not have been asked if Guy was able bodied!
Equally I have had a couple of people stop me (more so when he got his ventilator) to say what a good person I was for being with him. A weird comment as I can promise I am the same wife as I would be if he was able bodied – he gets into trouble if he has forgotten to do the jobs that I give him for the day haha!
Navigating our relationship
Our relationship is different. As Guys needs have increased and especially since having a tracheostomy, he is supported by two carers 24/7. This does mean we get very little alone time, but you adapt.
It also means we don’t share a bedroom. Guy sleeps downstairs with two waking overnight carers and I have the upstairs of the house, with our son.
Would we like this to be different…yes. But we both feel lucky to have found each other and to share the love and friendship that we do.
Having Children
Guy and I have a child. Our son is largely unaffected by Guy’s disability. We recently hosted a birthday party for his friends – many of whom don’t know that our son’s daddy is in a wheelchair and even less so that he has a tracheostomy. Were they bothered? Not in the slightest.
I think that is one of the joys of children – it they are interested in a person’s disability they may ask what that’s for or why, but once they have the answer they were quickly accept that person for who they are.
I think that is the ultimate message – you can have a relationship. It may be harder to find that person; harder to build up the confidence to ask them out; and harder to navigate the relationship but it will be worth it and it will be a stronger relationship as a result but find that person that accepts you for who you are.
We’ve been together now 16 years and life is hard – especially as Guy’s disability progresses, it’s hard to watch a loved one suffer – but we are best friends, and we wouldn’t change anything for the world!
Intimacy, sexuality and ventilation
Suzanne Glover and Kirsty Liddiard
Cripping Breath, University of Sheffield – www.sheffield.ac.uk/cripping-breath
Beginning on ventilation as a treatment can mean a big life change, in many new ways.
For some it may be unexpected, while others may have been anticipating beginning on ventilation for some time. Regardless, it can mean adjustments, appointments, and getting used to a new form of treatment in your life. None of this is insignificant.
Something clinicians and others may not consider is your sexual and intimate needs, desires, and relationships. Becoming a ventilation user can affect your self-confidence, sexual self-esteem and how you feel about yourself.
Sometimes becoming a user of a treatment for a chronic problem can make us feel like we should no longer prioritise relationships and intimacy; or we feel embarrassed and that we may not want to. Much of this depends on if you are in a relationship at the time of starting ventilation, or single and/or looking for a partner. All these feelings are normal!
“I remember when I started nocturnal ventilation – it was a big shock. I was very unwell at the time, and still a consideration in my mind was, will my partner still find me sexy wearing a Bipap mask in bed?! It shouldn’t have mattered – but it did, initially, to me” – Anonymous (ventilation user)
Often it can be difficult to ask for help in this arena – Is it safe to have sex? What if I feel breathless during sex? What kinds of positions are helpful if you have a low lung capacity? Will my partner still find me attractive? How do I tell a new partner I use ventilation? All these questions are totally understandable, and this page on the HMVIP site won’t give you the answers, but we do hope to support you to think about how you can make intimacy – whatever that looks or feels like for you – comfortable.
“I remember thinking a lot, does my use of NIV [non-invasive ventilation] make me “ill”? If so, do “ill people” have, like or want sex? The answer is of course yes, but my feelings about now being chronically ill really troubled how I felt about my sexual self back then” – Anonymous (ventilation user)
Understandably, if we have a partner, we may worry about the impact of ventilation use upon them – even in the most practical of ways. However, recent research into ‘bed partners’’ experiences of ventilation showed that, ‘overall, 91% of bed partners had a positive attitude towards continuous positive airway pressure therapy, 86% perceived mask looks not negative, 64% stated no negative intimacy effects’ (Laharnar, 2024).
Some studies have even demonstrated how ventilation use actually improves the relationship between couples due to a reduction in sleep apnoea symptoms (i.e. snoring) and sexual functioning with reduced sleep apnoea side-effects, such as daytime sleepiness (Poletti et al. 2025).
We hope that this short piece is a gentle reminder that it’s okay to have concerns and worries about our sexual lives as ventilation users and it’s okay to speak with clinicians and others involved in our respiratory care about sex. Entering a new relationship as a ventilator user or beginning to use ventilation in an established relationship is daunting. But research also tells us that having quality sleep, healthier bodies and minds and being a more peaceful bed partner (less snoring!) can support us to live healthy sexual lives also.
References
Laharnar, N., Bailly, S., Basoglu, O. K., Buskova, J., Drummond, M., Fanfulla, F., Mihaicuta, S., Pataka, A., Riha, R. L., Bouloukaki, I., Testelmans, D., Trakada, G., Verbraecken, J., Zimmermann, S., Penzel, T., & Fietze, I. (2024). Bed partner perception of CPAP therapy on relationship satisfaction and intimacy—A European perspective from the ESADA network. Journal of Sleep Research, 33(4), e14125. https://doi.org/10.1111/jsr.14125
Poletti, V., Battaglia, E. G., Banfi, P., & Volpato, E. (2025). Effectiveness of continuous positive airway pressure therapy on romantic relationships and intimacy among individuals with obstructive sleep apnea: A systematic review and a meta-analysis. Journal of Sleep Research, 34(1), e14262. https://doi.org/10.1111/jsr.14262
