by Jeannie di Bon, October 11th, 2022
This is such an important question – relationships and communication when living with a chronic illness. I thought I would reach out to an expert in this field – Natasha Lipman. She kindly wrote some words for this blog and we can’t wait to hear more from Natasha at our November members meet up of The Zebra Club:
Thanks so much to Jeannie for asking me to share some of my thoughts on relationships when you live with EDS.
It’s worth noting that this is a really big, sensitive and nuanced topic, and we’ll be discussing it in-depth in a Zebra Club meet-up in November!
Today, I’m sharing just a few simple, introductory thoughts.
Something I’ve thought a lot about over the years is how the treatment for chronic illness so often neglects the fact that it can impact every single aspect of our lives. If the medications don’t work (and we’re not given the right tools and support) we’re often left feeling abandoned and alone, dealing with the consequences of a life that feels like it has been blown up from the inside.
Whether we like it or not, chronic illness changes us, and changes the way we interact with the people around us.
First of all, I want to say that it is possible to have a loving and supportive relationship when living with EDS. A lot of people don’t believe that – often because we’ve had experiences that prove otherwise. This is sadly an all too common experience for people living with long-term health issues.
Just because you may have to do things differently from the average person your age, it doesn’t mean that you aren’t a person who is deserving of a loving and fulfilling relationship.
Recognising that you still have a lot to offer, even if you’re in pain, even if you can’t go out that much, is really important. We are all full, complex people – and it’s not just ‘doing stuff’ that matters. There are so many different ways to contribute to a relationship – and paying attention to those things that can make such a difference.
I’ve found that my health has made us closer, more attentive, and more caring in our relationship than we probably would have been without it. We have found ways to make each day feel cosy and special, and have silly little rituals and routines that create intimacy, without having to go out.
We have “roles” in the home that work for both of us – and we continually discuss how we are going to balance our responsibilities throughout the week, making sure that neither of us are overdoing it.
It’s a cliché, but communication is key. Having lived with chronic pain and spoken to many people who do, I’ve realised how easy it is to expect people to just get how we’re feeling or what we’re going through – to instinctively know what we need them to do or say – without actually explaining it or asking. And so when we don’t get that, we can feel disappointed, misunderstood and unloved.
But a lot of the time we don’t actually communicate these things.
People aren’t mind-readers. It’s also worth noting that everyone has different communication styles – it’s easy to forget that other people have very different experiences and frames of reference.
It’s impossible to know what these illnesses feel like unless you live with them (although, after Sebastian got Covid, for example, he got a first-hand insight into brain fog – not a fan – and now better understands my experience!)
It can be helpful to sit down with your partner and use some of your favourite online resources to explain your condition, the impact it has on your life, and how it makes you feel. Using examples that are specific can be helpful, too. Ask if they have any questions and recognise that this will also be hard for them – seeing someone they love in pain and not knowing how to help can be hard. Ask then how this impacts them – perhaps they’re not communicating how they’re struggling too.
People respond to hard things in different ways – sometimes they get angry and frustrated and take it out on others or withdraw.
By the way, living with pain can also make us behave in ways we normally may not, and I think recognising this and talking about it is important, too. Saying something like “when I’m in pain, I get a bit snippy, but it’s not personal!” can be very helpful.
Explaining that, for example, when you’re fatigued you may not be able to talk, but you’d love a quiet cuddle on the sofa, helps to explain how you’re feeling and what they can do to support you. Or if you need to be alone in the quiet, explain that it’s not that you don’t want to be with them at that moment, but you can’t.
Just before our wedding, I sat down and recorded a podcast with Sebastian to discuss how we’ve navigated our relationship over the last 6 years. We talk about what it’s like to be with someone who can’t do a lot of those things “normal young people things”. To see someone you love in pain and not be able to stop it. To navigate the emotions and fear and the “burden question”. And, most importantly, how you find joy, humour and happiness, even in the most challenging times.
Thank you Natasha for sharing your experience and knowledge with us on this blog. Please let us know your thoughts in the comments below. And remember to join us for a live chat in November over on The Zebra Club www.thezebra.club.
Photo Credit – Kaye Ford @fordtography