Chronic illness affects sex in relationships. The sad truth of the matter is that sexual dysfunction is almost the norm for those of us with Fibromyalgia, and for many other chronic illnesses. There are a lot of differences, though, between chronic pain hitting existing established relationships and attempting to start a new relationship when you already live with chronic pain.
I’ve talked to a few single friends about the pitfalls of dating with chronic illness and that alone is difficult, the gauging when to even tell a potential partner about your illness… let alone when to tell them that sex may be off the table because of that illness (or at least may be much more limited than they would hope).
I do wonder sometimes it is easier to start a new relationship with them knowing what to expect than it is to change those expectations once they’ve already been established as part of the relationship? I don’t know the answer to that.
Recently, the great folks at the Rehab Lab at UNB sent me a poster for a study that they’ve been working on. The study isn’t published yet but the topic is important enough that they wanted to send me the info in advance. The topic: Sex in New Romantic Relationships For Those in Chronic Pain.
Those of us in committed relationships feel we have more social support than those who are not. That increased social support makes things much easier as we face chronic illness, we experience less stress, and better physical and emotional health. Very little (if any) research has been completed on how chronic pain/ illness impact new relationships or dating life in general. So, I applaud the Rehab Lab for taking a look at this. The goal of this study was to explore “the role of sex/physical intimacy in persons with [chronic pain]’s decisions regarding whether to seek a romantic partner, and their experiences initiating and developing a sexual relationship.”
The researchers surveyed 40 single or newly partnered (less than 6 months and not co-habitating) people with chronic pain. Transcripts were analyzed and what they found was not pleasant. And, it’s not just problematic for women. The below sounds like something that I could have said, or that many of us might say about how chronic pain affects our sexual relationships (new or old).
There’s a so much vulnerability and shame around sex to begin with. There’s so much vulnerability and shame around chronic pain. When you combine them together, it’s hell on earth at times. To even begin a new relationship we have to open ourselves up to a high level of vulnerability then when we are dealing with adding in the conversation of chronic pain and how it will affect that relationship it only increases the shame and the need for vulnerability.
I asked my friend Ali of The Invisible F (who is single and has Fibromyalgia) to share her insights on this touchy topic. Here’s what she had to share:
Dating with fibromyalgia or chronic conditions is very tricky terrain for me, first starting with when is the right time to tell the person. I’ve had experiences where I learnt sometimes it’s better to say it up front in case the person doesn’t want to pursue a relationship with someone who is chronically unwell. On the flipside, I also learnt that being upfront about it may frighten them off before they get a chance to know you better. People often get scared when they don’t have enough information or don’t understand. And my experience is that some people believe those of us who live with chronic illnesses are defined by that. I still don’t know if it’s best to tell the person in the beginning or later on. Truth is I don’t think there’s a one-size-fits-all answer. I think it varies with everyone, and I trust myself now to bring the topic up when I feel it’s right. – Ali (TheInvisibleF.com)
Now, in addition to telling someone your whole personal history you have to hit them with your medical history as well… and chances are you’ve got to fill in the blanks on the medical history earlier than they even get the full personal history.
You end up feeling like you have to over-compensate for your illness and how it might get in the way. I know I’ve felt this way in my own relationship at time. Well, if I can’t do X, and Z then I better really make sure I’m doing Y!
Embarrassment (shame) came up often in these surveys. One person said that they won’t speak up about what hurts or what they can’t do because they are embarrassed. I can imagine just how painful that is both physically and emotionally. Not to mention, how can you really start a relationship on the right foot when you are associating pain with that person.
Another brought up the idea that you may leave the other (healthy) person wondering if the info you are giving them is real or if you are just making up something to shoot them down.
Anxiety is another huge issue. Even when you are in the mood for sex and want to enjoy it, there is this anxiety in the back of your head that questions “what if this causes pain?” So, you try to compensate for what you fear might cause pain, or you are distracted from actually being able to enjoy the act out of fear.No way around it: Chronic pain affects sex in both old and new relationships. @RehabLabUNB Click To Tweet
While I can see a lot of overlap between what a person dating or in a new relationship feels about sex with what I’ve experienced in a committed relationship, the truth is that the vulnerability levels have to be much higher because they are already much higher in dating than they are in an existing relationship. In an existing relationship you’ve already put your stuff out there, they’ve already seen you as you are and you know they support you (even though at times we still question it). You don’t have that in a new relationship.
- chronic pain can make developing a new relationship, let alone a new sexual relationship impossible – it’s not just the pain itself but also the emotional and cognitive responses of both parties and how they are interpreted by the other party.
- Active strategies (talking openly about the issues) can facilitate the development of new sexual relationships.
- Passive strategies (avoiding touch) perpetuate the feelings of isolation and loneliness.
- Hiding the pain or “testing” a new partner to see how they will respond negatively to the pain results in an early end to the relationship (if you look for negative you will find it).
- Therapy to help the person in chronic pain accept their pain as well as to help them learn to communicate about their pain appropriately may be beneficial and should be a priority for those who are seeking committed relationships.
A couple of other blogs you might want to check out on this topic:
- BBHwithMS.com – Sex – a CURE for my MS Symptoms?
- Chronic Sex.Org
The Rehab Lab is continuing their research on how chronic pain affects relationships and would like your help. If you’d be willing to take a short 30-min survey sharing your experience with chronic pain, your feelings about yourself, and your relationships it could be greatly beneficial to their research. This survey is open to Canadians 18 and over, and Americans 21 and over.
In the questionnaires you will be asked for a little bit of information about you (e.g., age, gender), any persistent health conditions you may experience (e.g., arthritis, fibromyalgia, etc), your relationships, and your feelings about yourself. It will take about 30 minutes to complete the questionnaires. Participation is voluntary and all information you choose to share will be kept confidential. All participants will be entered in a draw to receive a $10 honorarium (i.e., a gift card) for their time.
If you are interested in learning more about the study please go to the study website at:https://survey.psyc.unb.ca/
- Fibromyalgia and Sex: The Unspoken Reality
- Fibromyalgia and sexual dysfunction
- 5 Ways to Show Your love, even when you feel like crap.
- When Your Partner is Struggling with Chronic Illness and Pushing You Away
Crump, L. & LaChapelle, D. (2015, October). “Feeling out the sexual waters”: Sex in new romantic relationships for persons with chronic pain. Poster provided by authors.
I have fibromyalgia, chronic pain, CFS and limited mobility; I have recently started a new relationship with a man who also suffers from chronic pain and neuropathy.
Our relationship is built on mutual respect, understanding and empathy as well as trust and honesty about our various illnesses and limitations. I am currently better than he is, but we take the time to express our love for eachother in the little things. Sex has taken place, and we are well matched , but it isn’t what our relationship is based upon.
Never forget to express your love and appreciation in any way that works for you.
Brilliant piece Jules!. One of the the things that stood out for me was the mention of shame and vulnerability around sex (which no one ever talks about but is so big especially in some cultures). Add chronic pain to that, and it gets super complicated. When, really, it should be one of the simplest things ever – actually, something that’s natural and a basic need for two human beings who care for eachother. Another great piece, thanks for your work hun! x