Caroline Lovett, a psychosexual and relationship therapist, explores some of the issues that might present when living with bone marrow failure conditions and long term treatment. 

We don't always find it very comfortable talking about sex. So when we have to deal with something that inhibits our sex life, it can be difficult to ask for help. When I talk to anyone who's living with an illness and having treatment, I commonly hear the same two words: loss and fear. They can feel like they’ve lost something, and they fear what it means for them personally and in their relationships, or their ability to form relationships. 

Most of the time, the people that come to me for therapy have been experiencing difficulties for a while before making contact, because they find it hard to talk about. But they’re feeling lost when it comes to their own sexuality, and may not be able to articulate what that means for themselves, or for their significant others. 

We have a great saying in psychosexual therapy: communication is lubrication. If you want to address the impacts of your illness on your sex life, if you can find a place where you’re able to talk, that's a really good start.

Navigating your sexuality

Many of the clients that I work with can feel as though they don't recognise who they are sexually. They no longer recognise who they are as an intimate person. But some of those barriers to intimacy can originate from how they learned about themselves as sexual beings in the first place. 

We're learning from the minute we're born about who we are and how we relate to others. We usually form this picture based on how we feel we should be. When something like an illness comes along that challenges how we see ourselves, we have to stop and think about who we are. It’s an opportunity to really learn about what’s important to us. 

If we can try to take away the expectations of others and connect to what's important to you as a sexual person, we can really empower ourselves. The people that I see with bone marrow failure often present with very similar experiences. When we find the space to talk about what's going on, we can help to find solutions that can make life a lot easier. 

Maintaining intimacy when dealing with fatigue

Often, bone marrow conditions come with feelings of fatigue. This is a feeling beyond just tiredness; it’s a feeling of absolute exhaustion that cannot be solved with a nap. This can be a serious block in enjoying intimate time with yourself or your partner. 

Try looking across your week to see where your energy is at its best. People still have this idea that sex happens at night, in the bedroom. We can get rid of that idea. If your energy levels are best during the morning or midday or in the afternoon, then let's look at that as a possible time for intimacy. 

Not all sex is about swinging from the chandeliers. There can be many different things on your sexual menu. It could be as simple as sitting down and holding hands, sharing a bath or having a nice massage. Once we start thinking about sex in a different way, we can start to manage the fatigue until energy levels start to return.

Experiencing pain during sex

Pain is another issue that people living with health conditions often experience. It’s not something you can easily ignore, but you can mitigate it and make sexual experiences more comfortable.

A bit of planning around sex can help. Sometimes people feel that sex should be spontaneous. You need to let go of that idea immediately. Nothing is truly spontaneous, and sometimes you need to plan a little more to ensure that we can be intimate comfortably. For example, if managing your pain could be an option, you might want to take some painkillers in advance of having sex. It’s about exploring ways of mitigating that pain, and planning around your condition to find the optimum times to be intimate. 

It may be the case that you don’t want to have sex, that the pain is too much, and that’s fine too. Remember that this is about discovering what you want to get from your intimate relationships. Penetrative sex might not be the answer right now, that’s up to you to decide.

Vaginal dryness and erection difficulty

The medications associated with treating bone marrow conditions can sometimes cause vaginal dryness. For men, it can result in sexual discomfort and difficulty with erections. Discussions on this topic tend to revolve around lubricants, and medications and products that can help with erections. ​​It may be worth talking to your medical team or GP about some of these options. I don’t advise using products from the internet as these could contraindicate with your condition or treatment.

Sexual positions also come into this. You can be as creative as you want to be in figuring out ways of making it work. The key is finding the confidence to talk openly to your partner, to talk about how you can approach sex differently. We cannot presume that our partners know what we’re thinking. We don’t know what’s going on in each other’s brains. You need to find the space and comfort to talk. 

Hormonal changes could be behind some of the changes you are experiencing. We often rely quite heavily on our sex hormones to connect with that sexual part of ourselves. But, it’s not necessary to enjoy a great sex life. If it is a serious issue, talk to your medical team about HRT and testosterone, they will be used to having these conversations.

Fear of infection

A fear of infection is completely understandable if your immune system has been compromised. But again, there are ways to plan around it. You have options available to you that will allow you to keep yourself safe sexually. Thinking about condoms and a water based lube may help and exploring with your partner what you need to happen in order to feel safe. It might be something that you explore together and try a few different things to make sure your sex life is safe and satisfying.   

Body image and changing self perceptions

Body image is another common problem that I hear from my patients. It can lead to a lot of disconnect in terms of how they look and how they feel about it, and what that means for them as a sexual being. Again, this comes down to unlearning assumptions about how we think we should look sexually. We need to get rid of those pre-programmed ideas of what sexy looks like and start connecting and identifying with ourselves. 

Sometimes, it's about starting small; connecting with the parts of us that we feel happy with. This can be starting as small as even just our little finger, looking at it from a place of appreciation, nurturing and kindness, and growing that connection out to the rest of your body.

When we're thinking about how we are sexually, it can be really helpful to think about how things are always changing for us, and how we can begin to accept those changes and move forward. 

How we are as sexual beings changes all the time. We're not the same person sexually today that we're going to be in five or 10 years. Learning to embrace some of these changes and letting go of how things were in the past is a crucial step to finding sexual happiness today. It allows you to move forward in a place of opportunity and curiosity. 

More articles and videos from Caroline

---

Further support and advice

• COSRT - College of Sex and Relationship Therapists. Psychosexual Therapists are listed here.
• mojoupgrade.com/ - For over 18s. Aimed at couples who are wanting to connect more sexually
• Omgyes.com - Based on research into women's sexual pleasure. Explores sexual techniques.
• Ergoerotics.com - A website selling products that can support sex (over 18's)
• Sex Etc - sex education for teens
• Amaze.org - Sex education for young people. Including Amaze Jr - aimed at younger children - to watch together with parents/carers.