Couples, sex & intimacy

Being a team, managing difficult feelings, dating with a rare condition

Couples

Being part of a couple can be a rewarding part of life, but it can also be complicated and frustrating at times too. Every individual brings their own personal set of needs, assumptions and longings to any relationship.

When you are impacted by a rare condition there can be additional things to manage.

These might include:

  • particular demands on your time or resources
  • changes to roles or responsibilities
  • difficult decisions about the future how best to look after your own wellbeing as well as that of those you care about

Making time for good communication, being together, resolving conflict positively, and enjoying each other’s company is all part of looking after both yourself and your relationship.

Every couple relationship is unique

All couple relationships contain assumptions that each partner brings to it about what life and relationships are like. These are often not conscious, or well thought out – it’s often just ‘how we are’.

Our individual assumptions are informed by a wide range of factors such as:

  • early family relationships
  • relationship or dating history
  • personal attitudes about work, finances and sex
  • beliefs about gender roles
  • religion or cultural background.

When life is going smoothly these assumptions might not get challenged too much. We might not even know they are there, or the ways in which we might think very differently to our partner!

But life often throws up different challenges – like living with a rare condition.

It is through life’s ‘stresses and strains’ that we often find out the most about ourselves, our partners, and how we respond to change or when times are hard.

This can be both challenging and rewarding.

[My partner] just took it for granted that I’d stop working to look after K. But that wasn’t on my radar at all. It really threw us, particularly because she was so poorly and I was then ‘am I even a proper Mum if I don’t want to do it like this?’

But … why are you so different to me?!

We all have different personal coping strategies for managing difficult feelings, experiences or life events.

Deep down, we all want to be understood, accepted and feel cared about. We often want our partners to just ‘know’ what we need, without us having to tell them. However, what seems so obvious to us, may not be so obvious to them.

Tensions often arise in relationships because we expect people to ‘behave’ just like we do – but ‘opposites do attract’!

Deep down, we may recognise that our partner can ‘do something’ emotionally that we find much more difficult. For some people, this might be the ability to confront life’s challenges head on. For others, it is the capacity to not worry too much, too soon.

Both have value (sometimes at different times).

We are all different – which is why we all need each other.

I started to joke there were 3 of us in our marriage – her, me and the [rare condition]. We had to find a way of coping with it all (appointments and stuff) , and finding time just for ‘us’ again.

You, me ……and rare condition makes three

Making time for your ‘ordinary’ couple relationship, re-connecting as two individuals (and allowing your rare condition or caring responsibilities to ‘take a backseat’ from time-to-time) is really important.

It can be tricky to find the time and energy to do so, but making time for yourselves as a couple is part of helping relationships survive and grow.

Therapist Tip

Relationships are like plants, they need regular ‘food and water’ like care, attention, love and nurturing, otherwise they start to show signs of stress. Different relationships have different care needs, but all need at least some time and attention to keep them alive and well.

Think of yourselves as a ‘team’ 

Addressing issues and difficulties together helps you feel you are working together as a ‘team’ and less on your own.  

Sometimes in a relationship it is one person who deals most with managing the impact of a rare condition. The other partner may be less involved day-to-day, or more unsure of their role in relation to it.

This may work for you both. However, if it doesn’t, try to start a conversation about the ways in which you would either like to be more involved or (alternatively) have more help. 

Therapist Tip

If you are a parent, is it usually one of you who does most of the ‘hands on’ childcare? If so, how do you feel about this? How does your partner feel about it? How do you keep each other ‘in the loop’ in order for you to feel you are still ‘parenting together’ even if you have different ways of doing certain things?

Acknowledge difficult feelings

There is a lot that can be frustrating, upsetting or difficult about the impact of rare conditions. 

Being able to share with each other when times are hard, or experiences upsetting, can help you not take it out on each other. Sometimes it is important to be angry with the rare condition, not each other. 

Sharing worries, and talking through possible ways of dealing with them, can often also help you feel closer. 

I used to be so snappy with [partner] after hospital appointments. The counsellor said maybe I was angry and upset about the condition really –  not him so much. It made sense…he was just someone to have a go at.  

What helps?

Talking to each other

‘I thought [my husband] not talking about my diagnosis meant he didn’t really care that much. Now I realise it was because he was worried about getting upset, or upsetting me.’

  • Talking about your relationship, and how you are both coping with difficult things as individuals, can help you understand each other better and feel closer. It can also sometimes help you avoid – or recover from  – misunderstandings.

Schedule ‘Check-Ins’

  • A regular ‘date night’ can be a good way to ‘check in’ with each other, even in the midst of busy daily life. Date nights don’t have to be complicated or expensive.
  • Try to have time where you aren’t necessarily talking about health, or your rare condition
  • This could be a nice meal, chatting instead of TV, a walk, playing a board or computer  game together, or just going to bed and cuddling.

Ask for what you need

‘I was really tired and upset, and just wanted a hug, not a lecture as to how I should deal with it. They said ‘well, why didn’t you just say so?’ and that hug really helped’

  • Our partners are not mind readers when it comes to our needs.
  • Asking for what you want or need may not come easily, especially if you have been made to feel bad or silly for it in the past. However, partners often really appreciate a ‘heads up’ about what we need to feel loved and supported.
Couples counselling

Sometimes talking through difficult things together (and how you are coping or relating) is easier with the help of a couples’ therapist.

You do not have to be on the verge of breaking up to see one. Counselling can help you understand each other better, and find new ways of communicating or addressing your issues.

Relate has a wide range of resources to help with common relationship problems from resolving conflict, to parenting advice, and finding a couples’ therapist.

Couples therapist Esther Perel has a blog and podcast series on common relationships problems.

Suggested reading

Us: Reconnect with your partner and build a loving and lasting relationship by Terrance Real.

Day-by-day: Emotional wellbeing for parent-carers by Joanna Griffin.

Married with special needs children by Laura E. Marshak and Fran P. Prezant.

Five arguments all couples need to have (and why the washing up matters) by Joanne Harrison (audiobook and hard copy) is a great place to start for talking about your relationship.

Befriending your body

Being able to enjoy your body (whether alone or with another) is often a very important aspect of life.

Not everyone is interested in sex, but research shows it is something many of us think about quite a lot – even if we aren’t talking about it to each other.

What makes you ‘you’?

Society and social media often provide very narrow definitions of what is ‘attractive’.

If you look unusual or different in some way, it can take time to feel comfortable with your own body and appearance. Your body might have changed as a result of the impact of your rare condition itself, treatment side-effects (including surgery ) or it might always have been this way.

How we feel about our body fluctuates naturally over time. We all feel more ‘ok’ about ourselves or how we look at some times more than others. This is very normal.

If you are struggling with how you look, and it is impacting on your relationships, self-esteem or quality of life, consider talking to a counsellor or psychologist.

What helps you befriend your body?
  • List the things you like most about yourself – include aspects of your appearance, but also your personality and character.
  • Remind yourself that what makes us attractive to others is the whole of who we are.
  • When you feel annoyed with your body, remind yourself that your particular body is doing the best it can for you right now (even if it’s not always functioning reliably, or as you’d like).
  • If your appearance changes as a result of the impact of your rare condition, it’s ok to have feelings about this.

It’s taken a while to accept ‘me’ really. I’ve had a lot of ups and downs but I really quite like who I am now, how I look. I don’t even worry that much about the scars either now, and I never thought I’d feel like that.

Bodies by Susie Orbach is a book by a psychotherapist which challenges society’s pressure to look or appear a certain way.

Changing Faces is an organisation that offers support, information and guidance for those living with visible differences.

Face It is an 8 week online programme for people living with various types of visible difference.

Difficult or bad experiences

Sex and intimacy can become complicated for all sorts of reasons.

Examples include:

  • feeling stressed or exhausted
  • worries about your appearance
  • different, or lack of, sexual organs
  • fears of, or it being painful
  • needing to ‘do it’ in a particular way after recovery from treatment or surgery
  • pressures of work or parenting
  • difficulties in forming relationships
  • when trust is broken

It can feel embarrassing to talk about sex, particularly if it has not ‘felt ok’ when you have tried to do so before.

You might also be worried about hurting the other person’s feelings, or getting a bad reaction. Sometimes problems with sex can be to do with broader issues between you as a couple, and how you are getting along together generally.

Good sex and physical intimacy involves communication.

This means checking in with each other about what you want or like, and feels good.

Talking about sex
  • Use ‘I ‘statements to help the other person feel less defensive
     ‘I really like having sex with you, and I feel we don’t often have time for it anymore. Could we talk about it?’ sounds very different to ‘you never want sex’.
  • Pick your time and place
    Talking about sex when you are already in bed can feel too pressurising. Try to pick a neutral time and place where you won’t be interrupted or overheard.
  • If you are worried about something hurting (either you or the other person) let them know
    There may be ways around that in terms of position, or aids that can help.
  • Have an ‘in the mood’ signal Sometimes a partner might assume you aren’t interested in sex because you have had a pain flare, a difficult day, or been tired or upset. This might not always be the case, so let them know if you are ‘up for it’! This could be a phrase, asking outright, or a particular outfit.
  • A regular sex-date
    It might not sound very romantic, but this can help you work towards ‘keeping time’ for sex. For example, Tuesdays at 4pm or Sunday mornings. Even if it has to be rescheduled because of a symptom flare, or childcare, it helps keep a place for sex and intimacy. If it has to be deferred, it can still become something to look forward to.

 I’d really lost faith in my body after everything. I’m starting to relax a bit more again and believe he still finds me attractive.

When sex is painful or difficult

Sex that is painful, or difficult to ‘do’ can be very frustrating. A problem may be temporary, or more ongoing.

If sex is hurting or happening in a way that you are not enjoying, let the other person know. There could be a different position to try, or aids that help. Sometimes sex becomes painful for reasons that are emotional as well as physical. If your body has been ‘intruded upon’ (perhaps because of surgery, tests or treatments) it can sometimes make it harder to relax, or allow it to become a source of pleasure for you again.

Depending on the nature of your difficulty, think about who best to speak to for advice. This might be together as a couple, or on your own. Consider talking to your doctor, nurse, or a couples/sex therapist. If they do not know how best to help, think about another professional who might.

Not wanting sex

The desire to have sex sometimes disappears, or might never have been there. Coming from a family or culture where sexual desire was disapproved of can also make it more difficult to be in touch with being ‘turned on’.

You might feel ok about not wanting to have sex, or not. If you are in a long-term relationship, it can sometimes cause tensions if your partner still wants sex but you are no longer interested.

Lack of desire can also be because of what you are coping with (or have been through) either emotionally or physically. You might also be exhausted, or ‘stressed out.’ Sometimes it can be related to imbalanced hormones, or ageing, or the specific impact of your rare condition. Sometimes, sex may not feel important anymore even if it has at other times in your life. This feeling might be temporary (perhaps as a result of other things happening in your life) or it may be more permanent.

 

What helps with painful or difficult sex?
  • Understanding more about the reasons behind difficulties, or lack of desire, is the first step.
  • Decide how you want to respond or deal with this.
  • A counsellor can help you work out what you are comfortable with, or is right for you. You might want to go for counselling as a couple, alone (or both).
  • Clinical nurse specialists can make suggestions for managing sexual difficulties that arise from a rare condition itself or treatment side-effects.
  • Stay physically affectionate with a partner if possible. This will help you feel emotionally connected, even if sex is difficult.

Therapist Tip

There are lots of different ways to be intimate. If one way is complicated (or not possible) explore other ways to feel physically and emotionally close.

Dating with a rare condition 

Whether you are a parent of a child with a rare condition, or have a rare condition yourself, you might wonder how and when to raise it with someone.  

Telling new partners about your rare condition

It can be hard to know when you are first getting together with someone (or if a sexual encounter is casual) how much to say about your rare condition. If your rare condition is not particularly visible (or even if it is) you may not be sure what you want – or need – to say about it.  

There are various ways you can approach telling new, or potential, partners about yours, or your child’s rare condition. What feels like the ‘right way’ will be different for everyone.

What helps?

Be upfront early on

  • Explain (along with the other things about yourself, or your child) how your rare condition is part of your life
  • Saying a little about what that means, and how it impacts your life so you can see how someone responds. You can then decide whether to say more or not.

Wait for the subject to come up, or raise it after you have met a few times

  • This might feel easier if your condition is less visible, or they have not yet met your child/ren.
  • Bear that in mind that waiting too long before saying something may make the other person feel you have been keeping something from them. It’s a balance.

Think ahead (or role play!) with someone you trust

  • Plan what to say, and what questions might come up so that you feel prepared.
  • Remember the other person might need to digest the information, and then have questions. They may also want to share personal things about themselves.
Family or cultural pressure

In some cultures or families, there may be a pressure not to talk about a rare condition, particularly to a potential life-partner or if a condition is genetic.

However, there can be implications for both trust, and future plans, in a longer-term relationship if you haven’t talked together about your condition.

If you are finding it hard to let someone know about the rare condition you are impacted by, would like to talk about it more, or are unsure about disclosing it at all, talking this through with a neutral third person can help you make the right choices for you.

This could be with a genetic or psychotherapeutic counsellor, and/or someone from your own cultural background. Your healthcare professional may also be able to help, or refer you to someone.

Related pages

Couples, sex & intimacy

Being a team, managing difficult feelings, dating with a rare condition

Parenting

Ways to recharge, supporting siblings, coping with difficult behaviours

Extended family & friends

Opening up conversations, asking for support, ‘who is good for what?’

Talking about your condition

Deciding what to share and when, talking to children &  young people

Section guide

9

Diagnosis

9

Uncertanty change and loss

9

Relationships

9

You and your feelings

9

Navigating healthcare

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Sources of support