Mark’s wife Sharon has lived with incontinence for many years. Her journey was not easy, being repeatedly misdiagnosed with various conditions meant she didn’t get the surgery she needed for over a decade. We talked to Mark about how chronic conditions such as incontinence can affect relationships and what advice he has for other partners that might be going through the same thing. Mark had been observing his wife Sharon attending appointment after appointment and never getting help. She had been experiencing faecal incontinence (loss of bowel control) and it was getting worse and causing her a lot of distress. “I knew she had these difficulties, but she always played it down, made light of it. There were several occasions when she was caught out [had an accident] and it was really devastating for her."
Over the years Sharon went to the doctors to ask for help multiple times and was always told her bowel leakage was being caused by IBS (irritable bowel syndrome). Sharon didn’t feel happy with that diagnosis as no change of diet or lifestyle made her symptoms better. “For some reason Sharon didn't feel able to stand up to the doctors herself. Despite the fact that she's a nurse and used to talking to doctors," explains Mark. "And the second thing was that she's actually a very good advocate for other people. If the problem was somebody else's problem, she'd be the first person there holding her hand up and saying what needed to be done. But when it comes to advocating for herself in those situations, she just didn't feel capable of that, or when she had tried to advocate in the past, she hadn't felt listened to and was just sent away without further help or investigations into her condition.” Noticing that Sharon was having more accidents and how it was affecting her, Mark went with her to her next GP appointment.
"In the past doctors would always start down the route of irritable bowel syndrome—because The Lines that was the go-to diagnosis. And if she didn’t accept that, then it must be anxiety—it's the pressure of work, and you've got too much going on. Because I had this knowledge of how often she'd been fobbed off with this same diagnosis, it did help me to be able to say to the doctor, ‘you're not listening’.” “I said to the doctor, 'IBS has been suggested several times and it's unlikely to be stress of work because she loves her work. We go through the rigmarole, and it's never sorted. You actually just need to listen to what she's saying this time'. There was a degree of luck in terms of the doctor that she saw having a fresh perspective because she hadn’t seen that doctor before and it was an opportunity to kind of break the cycle.”
With Mark advocating on her behalf, Sharon had an internal exam at the doctors that day which led to the discovery of her severe rectal muscle injury, which was caused by giving birth over a decade earlier. She has now had treatment which has improved her quality of mental health and life considerably.
- Learn to read between the lines
“Part of the way a partner can help is to be listening and be mindful of what your loved one might actually mean when they say something vague. I still don't think I know the full extent of Sharon's problems. Because they were going on for such a long time and she felt she had to deal with it in a secretive way because it is such a personal issue. Sharon's very mindful about the language she uses with me, it is normally indirect. She'll downplay it because she doesn't want it to become the defining. thing about her or our relationship. She'll say things like ‘I've had a problem’, ‘I'm not having a very good day’ or ‘I've been ill’, but I now know what she really means is ‘I've been in the bathroom a lot’. So, understanding your partner's terminology is really important to be able to help them, unless you're tuned in and listening, you might not realise what they're saying. Always make a mental note of the phrases they use and what they could be trying to tell you, read between the lines.”
- Encourage open and honest two-way communication.
“Ultimately, you can only help if they ask and you know what is actually going on. If Sharon was open and said, ‘I’ve **** myself again’, it would be much easier to deal with because I would know exactly where she's at. But I also understand that's not a very pleasant thing to have to talk about, or to say out loud. But it affects everything. It leads to other problems because for example if you were going out, if you've not listened to what the person's saying, you might be rushing them and saying, ‘come on, do your last trip to the toilet. We need to get going’. And actually, that's putting more pressure on them and probably causing them to resent you in that moment, instead of recognising where they're at and trying to help them. So, I suppose there's a bit of two-way communication to try and be open with each other. “ “As the person experiencing health issues, try not to be embarrassed and just use language that really explains what is happening, even if it feels horrible and awkward to talk about. Humour often helps, but you have to read the room and judge that the person is ready to make light of it. As the loved one of the person with health issues, you might have to be brave and start the conversation and say, ‘what is really going on?'.”
- Talking about the elephant in the room may improve intimacy
“I think often people don’t want to discuss toilet problems with their partners because they feel it will ruin the intimacy, but knowing what is happening and being really open with each other will make you closer. Instead of your partner turning you down if you suggest being physically intimate, and you thinking they don’t love you or there is something wrong with you, you will know that it is their medical problem causing them to not want to be physical, not you. And I find that stops a lot of problems that can be caused by feeling rejected.”