Intimacy and chronic illness – how to make it work

Updated: Jun 23


Unfortunately, intimacy and sex is still often being treated as a taboo topic, or something shameful that you shouldn’t talk about. For some reason, many people have the assumption that disabled people don’t have sex, or that we aren’t interested in intimacy at all. The truth is: Love and intimacy is a big part of many people’s lives- no matter if you are disabled or not – so why should we not talk about it?


Especially when it comes to chronic illness or chronic pain, talking about this more openly can be extremely helpful, because it allows us to share our tips and tricks and maybe find ways, that make this experience more enjoyable.


Content warning: in this article, we will talk about intimacy and sexuality! If this topic is uncomfortable or triggering to you – maybe skip this one and come back another time!


So, let’s talk about sex and chronic illness!

Some people assume, that chronically ill or disabled people have no interest in a sex life or in dating. Many people even perceive disabled people (especially visibly disabled people) as asexual. Well, that is not true! Of course, there is no shame in being asexual, but being disabled doesn’t automatically mean, that you are! Just because you are dealing with an illness or an impairment, doesn’t mean you lose all your interests, including intimacy!


I think, that experiencing intimacy can be a very good thing to experience when dealing with chronic illness or pain, because it allows you to feel positive sensations in a body that usually often uncomfortable and painful, and it can help relieve a lot of stress and tension!

Let’s not forget: orgasms are a great way for our bodies to produces endorphins, which is a great natural painkiller! We also release oxytocin, the “cuddle” hormone, which helps release stress and form a closer bond to our partner.

So, whether we experience sexuality alone or with a partner, it can be a very pleasurable experience that can distract us from all the negativity and offer some relief.


But, as with all areas of life, experiencing chronic illness can have an effect on how we can experience intimacy and sometimes it can be difficult to navigate it all.

Of course, every single body is different, everyone has different symptoms and different limitations that have individual effects on how we can experience intimacy and sexuality, so there is no ‘one fits all’ solution. But there are some tips that that are hopefully helpful to some of you!


So, what can we do to make intimacy an enjoyable as possible?


1. Open communication

This, by far, is probably the most important thing in any partnership of any kind: communicate openly. Have an honest talk about your needs, what you can or cannot do (or want or do not want to do), and what things are important to you. Chronically ill or not, this is important in any relationship, but especially important when you have an impairment of any kind.

If you get to know someone and you have the feeling that they aren’t taking your needs seriously, that they aren’t listening to you or aren’t ready to make accommodations and make you feel safe and good, then maybe they are not the right match. A good partner will always do their best to listen and never push you into anything that is making you uncomfortable. Respecting someone’s boundaries is extremely important and if you feel like your boundaries aren’t respected and you aren’t feeling safe- that is not a good sign.

If someone cares for you it is in their interest to make the experience enjoyable for both parties involved!


Tip: If you have a conversation with your partner and you don’t know how to talk about it, you can try starting your sentences with things like “I wish...”,I feel comfortable/uncomfortable with…”, “it would help me if…”,” I like…”. And it doesn’t have to be a serious conversation, it can be playful and light hearted! You can try card games or taking online quizzes and have a little laugh together, so the situation is not as tense.

But I can assure you: The moment we express our wants and needs more openly, the better this whole experience will become for both!


2. Put pleasure first


When it comes to sexuality, many people have one goal: the orgasm! Especially women are often under pressure to reach the climax fast, with ease - and it better be a great one too! Unfortunately, if we put ourselves under pressure, things usually don’t work the way we would like them to. We tense up, and there goes the pleasure.

So, one thing to try out would be to completely put the “goal” aside and take time to think and talk about: What do I enjoy? What are the sensations that I like? What type of touch do I enjoy most? Where do I enjoy being massaged? What helps me feel most comfortable? What toys could be helpful or enjoyable?

We need to remember that there is not one way to enjoy sexual pleasure. There are so many different ways that we can explore! If one thing doesn’t work out, there are so many other options. So, don’t put pressure on yourself.

If you experience intimacy alone, you can take time out of your day to think about this for yourself, maybe give yourself a little massage, and put your own pleasure first. The better you know your own body, the better you can communicate your likes and dislikes!


Many people who struggle with chronic pain need to be extra careful, so don’t feel shy to experiment with different positions and tools like pillows or blankets that may help in finding a position that allows you to relax and be as pain-free as possible!

Finding out these things can be a fun adventure and a playful experience where you can learn more about yourself and your partner, and maybe find new things that you like!


And we need to remember: intimacy can happen in so many different ways! It doesn’t always have to be sex, a good cuddle session or massages are also a great way to be physically close, release oxytocin and experience comfort and safety. Allow yourself to think outside the box and take away the pressure of needing to “perform” a certain way, and focus on pleasure and comfort instead. This can be just as fulfilling (or even more fulfilling!) than putting pressure to make things work a certain way.


3. Don’t be afraid to use tools!


There are so many tools out there that aren’t just great fun, but also extremely helpful for those with chronic illness or pelvic pain.

  1. Lube! Don’t be ashamed to use it! It does not mean you are not good enough if you rely on extra lubrication. It can make a huge difference in making the experience less painful, so why be ashamed? Better too much than too little, don’t be shy!

  2. Vibrators! If you struggle to stay in a certain position for too long, reaching climax can be really strenuous. Don’t be shy to introduce sex toys like vibrators even into your partnership! If your partner sees that you can climax way more easily and pain free when using some additional help, they won’t mind it – and there are some toys that are designed to be used together!

  3. Dilators! If you struggle with pelvic pain or vaginism, dilators are a great way to tackle that. You can get sets of different sizes and when used regularly, they stretch and “train” the muscles so insertion will become more and more painless. You can read more about them here: https://www.mskcc.org/cancer-care/patient-education/how-use-vaginal-dilator

  4. The Ohnut! The Ohnut is a sextoy designed for people who experience painful sex. It is made out of silicone rings that can be stacked, that build sort of a “buffer” and allow penetration to be much more painless. They feel extremely soft and can allow you to try out positions, that would otherwise hurt. I will link it here so you can take a look for yourself! https://ohnut.co/ The only downside to this product is the price- it is a bit of an investment (especially if you order it outside the US, the shipping fees are a bit high) but it is an investment that is worth it in the long run! (Fyi- I was not paid or sponsored to mention the product here, I bought one for myself a while ago and I absolutely love it!)

  5. Body pillows! Using pillows can be extremely helpful in avoiding pain or tension, when used strategically they can support your body in a way that allows you to be completely relaxed. You can use any pillows you have, but I found these list of specific body pillows that were made with the intention to be used in different sex positions: https://www.shape.com/lifestyle/sex-and-love/butterfly-sex-position



4. Be creative!

There are so many ways in which we can experience intimacy! In our heteronormative society, the focus so often on lies on penetrative sex- when in reality there is so much more to it than that!

There are so, so many ways in which we can experience pleasure. If penetration causes you pain- don’t be ashamed because trust me, you are not the only one!

Don’t be shy to get creative, try out new things, get some new tools and put fun before pressure.

Sex can happen in so many different ways, we really don’t need to put ourselves into this restrictive box of conventional, penetrative sex. And it has absolutely nothing to do with the “quality” of the experience, penetration does not have to be the “end goal”, there are so many other ways in which you can experience joy. Every single body is individual and feels individual, and that is perfectly ok.


5. Take your time


We all have certain expectations, but often they end up putting us under pressure and create more stress than necessary. One of these expectations is often that “sex needs to be spontaneous!” But why does it have to be?

For many people, it can help, having a certain routine or making time for a “date” –so we can prepare!

People who experience chronic fatigue, ME/CFS and PEM for example, need to be very careful with their energy recourses. Many of us are not able to cook, clean, have doctors’ appointments, and also have physical exertion in form of sexuality all on the same day- or even the same week! (Let’s not forget, sexuality means having a very intense sport session to some people!)

It can be really helpful to have one day where you set aside some time for each other, that you can spend in whatever way you like- and give each other your full attention.

It can help to know, for example “On Friday evening we will have some couple time”, so you can plan to rest beforehand and on the day after. Also, having all our tasks completed at a certain point allows us to fully focus on our partner without any distracting thoughts!

While some people may find it restricting or “boring”, to some it can help to mentally prepare, and to “get in the mood”.

You can talk about it beforehand, plan it together and talk about all the ideas you have, and what you would like to do together, maybe in the form of sexting – so this really doesn’t have to be boring! ;-)

And don’t be shy to take your time! Especially if you suffer from pelvic pain, having a long cuddle and massage session beforehand and having a focus on “foreplay” can really help relax the body, which can then be helpful in making sex less painful.


Put pleasure and enjoyment first, and let go of all expectations!


If you manage to create an atmosphere with your partner, where you feel appreciated, respected and safe, and where you can express your wants and needs in an open way, you already have achieved the most important thing.

Experiencing sexuality as a chronically ill or disabled person can be incredibly empowering, pleasurable and comforting, and nobody has the right to tell you that your needs or wishes are unjustified.


What are your favorite tips and tricks for pain-free and enjoyable intimacy?


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With love,


Rea

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