By Dr. Sally Shaw
“It’s really important to have good communication with your partner”. How often do you hear this message when talking about the difficulties we all face in attempts to navigate relationships? ‘Communication is the key’ etc. And, of course, it’s true! We do have to communicate well with our partners to have any chance of a half decent relationship. And it is a real struggle for a lot of couples out there trying to figure out what to talk about when, and how, and in what spare moment of the day in between work, food shopping, social commitments, kids, walking the dog, sleeping, breathing, and well, just trying to stay sane… Communicating well with your partner is already an up-hill battle for many an average couple out there in the world, but when you throw MS into that relationship… what is the best strategic approach to take?
See how I introduced the word ‘strategic’ right there already? Yep. I don’t want to talk about a romantic concept of communicating with your partner while lying in fields of wild flowers and sunshine, a rainbow overhead, and all the time in the world to discuss existential philosophy regarding the passing of knowledge from one to another. No. I want to talk about sucking it up and communicating effectively, not comfortably.
So, let me tell you what I mean by that.
No one wants to be a whinger. No one wants to bang on all day about how hard it is to feel their left foot, and how hard that makes it to do even the simplest of things – like I don’t know… walk, for example. Or sleep. No one wants to talk about an invisible symptom that makes it really hard to have your left foot at a particular angle under the bed sheets. It’s boring. Just as no one wants to experience it, no one wants to talk about it either. And just as the person with the invisible symptom doesn’t want to talk about it, other people seem just as uncomfortable hearing about it as well. But does that mean that people with MS shouldn’t talk about it? No, it does not. Does it mean that the partners of people with MS shouldn’t hear about it? No, it does not. Just because you are more comfortable keeping information about your MS to yourself… doesn’t mean you should.
Did you read that last sentence? Just because you feel more comfortable keeping your invisible ‘why-would-I-complain-about-it-when-i-live-with-it-everyday-and-they-can’t-fix-it-and-i-should-just-get-on-with-it-myself-and-not-bother-my-partner-with-it-because-they-have-enough-to-worry-about’ attitude to yourself, does not mean that it is the best way to do it. Sound harsh? Well, hear me out.
I often work with people with MS who stop talking about their symptoms with their partners. They may have spoken a lot about it at diagnosis. They may have shared the information sheets walking back to the car from the neurologist’s office. They may have looked over the pamphlets of medication together or even gone to the first follow up appointment together. Your partner may have even asked the neurologist a few questions… hey, they may have even asked how you felt at the time of your diagnosis! But then what happened? You got sick of talking about it. You hated the idea of becoming ‘that sick person that always talks about how hard everything is’. So you stopped talking about the stuff that your partner couldn’t see – it’s kind of easy to hide invisible symptoms. Your partner might have got frustrated because they can’t fix the problem that is hurting the person they love the most in the whole world. That feeling is so uncomfortable; feeling helpless is awful. So they may have stopped asking you about your MS symptoms, because they hate not having a solution. Or maybe they stopped asking because you stopped talking about it. Maybe they think you don’t want them to bring it up. There are so many reasons why you both may have settled for a comfortable level of communication about MS. And by ‘comfortable’, I mean… not talking about it.
Take, for example, a woman with MS who has a few invisible symptoms throughout a 12 month period. Her left leg ‘felt strange’ for a couple of weeks, she has increased fatigue, and she is experiencing some incontinence. Her husband doesn’t ask her about MS because he thinks she doesn’t want to talk about it, and she doesn’t tell him about these symptoms because ‘he can’t do anything about it anyway, and it’ll just worry him’. Her husband goes to the annual neurology check up with his wife, and is looking forward to hearing the results of the MRI to confirm to him that she is healthy and doing really well on the medication. He thinks that they’re lucky because the ‘MS doesn’t affect her’.
What he finds out at the neurologist office is that his wife has experienced several new symptoms (she brings out the diary she has used to record her symptoms and starts talking about things he wasn’t aware of) and he doesn’t know what to think. His first reaction is embarrassment that he didn’t know his wife was going through this. Then he wonders why she hasn’t wanted to talk to him about it. He starts thinking that maybe she doesn’t want his support, or that she feels unsupported by him. She has always looked really well and when he asks her how she is, she always says that she’s fine. They leave the office and he thinks ’she always seems alright to me’ and she thinks ‘he doesn’t get it’.
Now the couple’s communication style that seemed quite comfortable before, is not so comfortable in this moment. And if this husband hadn’t have attended the neurologist appointment with the PwMS… would he have ever heard the truth about her reality living with MS?
And I don’t think that’s fair. Because your relationship has MS. It just happens to be in your body.
That’s the big message for today. One could argue that you both have MS, but it resides in your body. So the onus is on you to tell your partner how it is affecting your body, so that they know what ‘the team’ (you and your partner together) are dealing with. They cannot read your mind! Not telling them about the symptoms might mean you are missing out on the support your partner could provide if they actually knew what you were going through. A strategic approach is needed to keep communication effective rather than comfortable. It’s about being up front working together as a team. The person with MS sharing information about the MS, and how it is presenting in their body, and the partner being able to hear it without expectation that they will be able to fix it.
It is much harder to work at a style of communication that feels a bit confronting, or different… but I want to encourage you to aim for effective communication with your partner because it will benefit the relationship, which in turn will be a much bigger win that either of you being comfortable in the short term.
Not easy. Not simple. Not comfortable. However, potentially much more effective in keeping the relationship strong and everyone on the same page in the team approach to living with MS.