Personal Relationships: Intimacy and ME/CFS

March 10, 2021


Warning: Contains adult content.

Intimacy among those who are disabled by ME/CFS can be challenging, and it can be just as difficult to talk and to write about.

But personal relationships are an important issue and it is something that we have been asked to feature by people in the community.

Fiona has M.E., and Matt, her husband, cares for her. Together they talk sensitively about the issues they have faced with intimacy in their relationship.

They hope that this honest account will help other couples who are facing the same or similar issues…

  • This article was featured in the current issue of ME Essential magazine. We have edited some of the content for use online.
  • If you are not a member of the ME Association, you can quickly join HERE and receive ME Essential magazine.
  • If you would like to comment on this article or on the topic it discusses and wish to do so anonymously, then you can email: Feedback@meassociation.org.uk or send a message via Facebook or Twitter to the ME Association and we can post it for you.

Fiona

My name is Fiona, I have suffered with M.E. for 26 years and, for the last 17 years, I have been mainly housebound.

I married the most incredible man, Matt, who has stood by me through thick and thin. I appreciate this is rare and I am incredibly blessed!

My heart goes out to those who have lost partners and loved ones as a result of the illness. Words can’t express the devastation of what M.E. can rob from us.

I write with an open heart to share the struggles and the joys, the tears, the pain, and a realistic perspective of how difficult intimacy with M.E. can be.

No one can prepare you for how hard living with M.E. is, let alone trying to balance a relationship and sex with a chronic illness that steals your vitality.

We were married for just a year, before the M.E. hit big time. I was a schoolteacher one day and bedbound the next. For three years I lay spaced out.

Sex? What sex? There is no way that a body that couldn’t walk to the bathroom could have sex! Our relationship changed from being lovers to a patient and carer role. At that point I could talk for only five minutes a day – if we were lucky.

Too demanding

We tried to have sex once but the implications were massive for me: another three months of not being able to get out of bed. It was the most excruciating time of relapse.

Matt didn’t like causing so much damage to my body (even though it was a natural thing, and he wasn’t actually doing anything wrong).

You don’t realise how much your body shuts down when you are ill. Internally, I just felt nothing, it felt like dead wood. My body had shut down on every level with no feelings or sensations.

Physically it was all too much; it hurt if he touched me. Sex as we knew it had to change. Matt was able to relieve himself and he used to draw on my back with his finger to relax me and we classed that as ‘sex’.

How we saw ‘sex’ had completely changed! Sex became him just holding me, holding my hand, lying next to me.

Kissing was hard because my throat was always so sore. But during this time, our friendship grew in depth. We had respect for each other in a very different way.

Pregnancy

After three years of being bedbound, the whole idea of becoming pregnant seemed insane, but we both wanted a family.

We tried and I never would have believed I would get pregnant straight away – and for both of our children!

My body could not do basic stuff so how had it managed to create a baby? It was miraculous.

However, I wasn’t able to produce breast milk for either child. I put this down to the body just being too exhausted to make any.

But this caused me to question just how good I might be as a mum, not being able to provide even the basics for my child from my body.

Matt and my mum took on most of the childcare and have helped a great deal in the raising of our children.

I am incredibly grateful to them both. It doesn’t feel enough to simply say, ‘Thank you’.

Increased intimacy

12 years on from having two children, where is the M.E. and how is the sex?

I am still mainly housebound, and my daily activities are very limited. Sex is still very rare as it has huge implications for my body.

It will still render me bedbound for long periods of time afterwards. But it is changing. My body is beginning to feel different; I have started to experience the sensations of sex and to climax. I pray it continues.

Top tip: Lubrication is always handy and helps!

Picking the right time of day to have sex is also vitally important with M.E. I find the morning is so much better than the evening.

There are some bonuses to my husband not being able to travel to work during lockdown. Planning makes a difference too.

I add extra rest before and after to make sure I don’t spiral so much. Juggling your energy is key to minimizing the relapses, whilst also allowing you to enjoy intimate time together.

It does take away the spontaneity, but it means the consequences of sex are less significant, so we work with the wisdom we have gained.

Top tip: Stay in tune with your body.

Our bodies are beautifully created, no matter how ill we are, no matter what size, or how we look. We are all created with beauty. So, work with what your body can do and practice acceptance of your limitations within sex.

Adapting sex to M.E.

Some positions are much easier than others. Our bodies are all different. When I am severe, the thought of experimenting with different positions is a no go.

On the rare occasions I have the energy, for me, the ones that work best are those where I can lay on my back which means my body is ‘resting’ as much as possible. With positions that require me to be on top, my body has not got the strength to take the demands.

If you like to be on all-fours, it can provide a deeper penetration that hits those spots. But, for me, this position is exhausting, so we adapt it and use the bath as a leaning post with Matt standing behind me.

The shower is also a good place for making your love-life a bit spicier. Just kissing and touching each other somewhere other than in bed makes it a little more exciting!

Some positions definitely require more energy, whilst others leave Matt doing all the work.

Honest communication is key. Being able to express how you feel about what is working and what is not really helps.

Having a relationship where you can be honest with each other and where you and your partner have a mutual understanding of the importance of alternating rest and activity is hugely beneficial.

You will find yourselves become excellent problem solvers and great time managers! This can also generate much-needed laughter during the process.

Remember that sex doesn’t need to revolve around actual intercourse. Manual stimulation and oral sex also provide ways to satisfy each other.

And if you are not in a relationship, a vibrator will also help with reaching your sensitive spots or just provide some gentle pleasure without consuming too much energy – and this helps to reduce the relapse afterwards.

Just because we are ill doesn’t mean we can’t get creative. We just have to be imaginative in the ways we can express intimacy with one another.

Emotions

It is very hard, when you have two people that want to express their love for each other but are unable or limited in how they can achieve it.

You are not free to do the things you would like. Instead, you are restricted, bound by an illness that gives you no break, no real life.

There are days when we just hug and let the tears flow, and there are days we don’t understand why or how we have been thrown this curve-ball in life.

Talking and explaining to each other about how you feel is a big key to getting through these times.

We may not feel beautiful or attractive. As a result of being in pyjamas for years, you let your appearance slip. The rawness of the illness leaves us feeling stripped naked emotionally on every level.

Overcoming how we see ourselves and keeping our heads above water is an emotional challenge. Some days it feels like drowning and we just have to hold on to the hope that one day our situation may just change.

I have found myself going through a grieving process. Grieving for the sex missed and grieving for the time together that we could have had.

It is hard not to resent your body, get cross with it and hate it for not doing what it should. Mentally it is hard when you want your body to be able to do something that it sadly won’t.

I have found there is sometimes a fear of physical intimacy because I know what the demands on my energy will be and what the pain is like afterwards…

As a couple, talking about issues is essential and it does make a difference. I will be honest; these are often raw, painful conversations. Your partner needs a voice and it needs to be heard too.

I struggle with some of Matt’s feelings, but I am powerless to change the situation. I am physically unable to change. I am physically dependent on him and it breaks my heart knowing that.

Matt

Being a long-term carer for Fiona means taking on roles I wouldn’t necessarily have imagined taking on when starting the relationship.

Fetching, carrying, and performing other tasks because she is unable to, can make me feel more like a servant than a lover.

And providing support and sympathising with the endless list of symptoms and troubles, both physical and emotional, can make me feel like a counsellor rather than stirring feelings of romance.

It can be emasculating and exhausting.

The idea that Fiona is sexually desirable and arousing starts to fade into the background as the needs of the illness and day-to-day living take over; especially after helping her to the toilet for the umpteenth time and listening to her coughing long into the night…

But just because the illness is present doesn’t mean that I stop having needs and suppressing those desires and feelings isn’t helpful.

Of course, it’s completely possible to satisfy my needs with self-gratification methods, particularly when Fiona is not physically able.

The danger here, however, is that the sexual act becomes remote and doesn’t involve her. Fulfilling my sexual need by myself can drive a wedge into the relationship and make Fiona feel even less involved.

It is vital to talk about our needs and desires together so we don’t lose the romance and sexiness from the relationship.

In my experience a disabled partner will likely be quite pleased to learn that you are thinking of them in this way! So why not explore ways that you can express this love together?

You could ask your partner to lie next to you whilst enjoying self-gratification so that, even if they are not able to join in, it is at least something that you can share together.

If Fiona is not well enough to have sex she might touch me instead – less physically demanding for her but an intimacy that reminds us we are not just carer and dependent.

You could ask your partner to wear something lacy and sexy that will arouse desire in you. Explore and talk about ways that you can express physical love within the bounds of the illness and your comfort zones.

You never know what you might discover and it will bring you closer together.


First image copyright lightfieldstudios


  • This article was featured in the current issue of ME Essential magazine. We have edited some of the content for use online.
  • If you are not a member of the ME Association, you can quickly join HERE and receive ME Essential magazine.
  • If you would like to comment on this article or on the topic it discusses and wish to do so anonymously, then you can email: Feedback@meassociation.org.uk or send a message via Facebook or Twitter to the ME Association and we can post it for you.

Leave a Comment

Shopping Cart