Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.
“Ideally couples should have three lives. One for him, one for her and one for them together”
I have always been a big believer that relationships are made up of three parts. You, your partner and the collective you. You support your partner with their Myasthenia but it is important that they support you in return. Without this equality, the triangle will collapse and it becomes more difficult to enjoy your identity as a couple. This entry is really about the most important team of all – you and your partner.
Over the last number of years, Laurna and I have, without knowing it, been defining and refining the ‘contract’ between us. This obviously isn’t a real or physical contract, more a collection of deals, boundaries or compromises agreed over time. Laurna probably has no idea that this ‘contract’ exists (sorry!) but it is a useful way for me to think about things. These are some of the ‘clauses’ that Laurna has unknowingly signed up to, to help me be a supporter
It took a long time for me to trust that Laurna would tell me if she wasn’t ok. I had to become quite strong in asserting my need to know this. In considering whether to walk another stage of the Camino de Santiago last year, I made Laurna promise that she would be honest about how tired she was feeling throughout. Fundamentally, if something goes wrong, I am the one that needs to figure it out – not an easy task on the side of a mountain. This applies to all scenarios, from doing a grocery shop together to going out for a meal. If you’re telling your partner that you’re not feeling so good when you’re already getting a lift home from Tesco in an ambulance, the horse has already bolted.
Laurna is generally really good at communicating but I know it’s not easy for everyone, particularly for men with Myasthenia who may be used to being ‘the strong one’. Allowing yourself to be vulnerable is difficult but we can’t help you if we don’t know about it.
People with Myasthenia have to make lots of decisions every day. Laurna will decide quite regularly whether to increase her medication if her ptosis is playing up. She might also be deciding whether to decrease her medication as part of her ongoing campaign to become ‘drug free’. These decisions are ultimately Laurna’s to make but they have an impact on me. In one instance, I was working overseas for a week. Laurna decided to step down her drugs while I was away. I came home days later to this frankly exhausted, depressed person. Besides from being obviously upset to see her like that, I also then had to cancel plans for the following days which I would never had made if I had known.
So little of the Myasthenia rollercoaster can be controlled. Where there is an element of choice, I think it is important to take advantage. This can apply to all sorts of things, for example, deciding on a ‘good’ time to take 6 weeks out for a Thymectomy, whether to try a new treatment or get involved in a trial. A bit of team planning can make these experiences easier and probably safer as there are more opportunities to put the right support in place.
This is something Laurna and I work hard to achieve on an ongoing basis but the example I would like to share is not actually from our collection of stories. Instead, I came across a lovely young woman at a conference recently who was very upset because she and her partner were having problems due to their differing energy levels. On nights out with friends, she would be tired and want to go home early whereas he would be having a great time and want to stay. By all accounts, there were some fraught taxi journeys home.
Another woman shared that her relationship was suffering because she wanted to spend their date nights watching DVDs on the couch whereas he wanted to go out together. He couldn’t understand why she couldn’t just ‘pull herself together’ and join him – surely she would feel better for a bit of air and some socialising?
Listening to this conversation was a sex psychotherapist (what a job) who specialises in couples where one or both have a health condition. She was able to share some examples of how her other clients have managed this type of scenario. Couples that were able to agree a plan in advance experienced less friction. They could agree that maybe once a month they would go out together but the other three weeks they would have nights in. When they did have to socialise, they could agree on a game plan for the evening before they left the house e.g. I’m feeling quite tired tonight so I will go for a couple of hours but you stay out/ I’m feeling quite tired tonight can we go for a couple of hours and both come home early.
I thought these were really interesting samples of the kinds of ‘clauses’ that may appear in other couple’s contracts. Every couple is different but the one thing I think we all have in common is the need to protect the two individuals at the heart of a beautiful relationship