Louise shares the emotional journey she went on when her partner was diagnosed with Becker muscular dystrophy. She discusses the lack of support they were initially given, the challenges she came across at work when they were unsympathetic towards her mental health, and the physical changes they’ve had to make to their lives.
Holding it together: a partner's story of diagnosis
When my partner, Dave, was diagnosed with Becker muscular dystrophy in 2023, my initial reaction was shock. It was made even harder by receiving his diagnosis over the phone. Having never heard of muscular dystrophy, it was really difficult to comprehend. I was worried about Dave, about his physical and mental health.
I think I went into ‘problem-solving’ mode to work out what we needed to do. In the first few days and weeks following Dave’s diagnosis, I’d ask every evening if there was anything he wanted to talk about, so we had that space to communicate about how we were feeling while it was slowly sinking in. I took the lead in learning what I could about Becker and considering a lot of the practical elements to give Dave time to take in his diagnosis. It sparked a lot of reflection and made us realise symptoms he’d had earlier in his life now made sense. That was an emotional process.
We weren’t offered any support, so I had to go out and find it
We’re lucky to have great family and friends, but there wasn’t any support offered when Dave was diagnosed beyond a list required medical appointments. So I took it upon myself to find support. During my research, I found a clinical drug trial that Dave was able to become part of, as well as charities we could get help from. Meeting others with muscular dystrophy through this, and attending events run by Muscular Dystrophy UK and TreatNMD, made us feel less alone. I was part of one of the Muscular Dystrophy UK support groups for partners which I really benefitted from. It was great to meet other partners in similar situations who had a shared understanding.
My unsupportive workplace was the last thing I needed
I found everything very overwhelming and struggled to cope with juggling all the changes at home as well as work. I tried sharing this with my manager at work but was met with little understanding. I remember being told everyone has a personal life, and I just had some “additional pressures”. That meeting made a difficult time much harder, reinforcing my fear that I should be coping better.
I remember being told that they couldn’t see an impact on my performance (I think this was intended as a slightly strange compliment) which made me feel like my output at work was the only thing that really mattered. I think the expectation from my workplace was that I would say if I needed support or was struggling, which I did try to do, but it’s difficult to know what you need if you’ve never been in that situation before. It’s hard to know the limit of what you can cope with until you hit it.
It all came to a head in the summer of 2024, when some odd symptoms – unexplained pain, brain fog, exhaustion – led me to think I was physically ill. I’m so grateful to the doctor who saw how unwell I was. She recognised my need for some time to just be, and I was signed off work for about 10 weeks. I cried with relief when I left the doctor’s surgery. The real “additional pressure” had been lifted.
That time off gave me the space I needed to feel better; to properly process Dave’s diagnosis, grieve our old life and clearly see I couldn’t remain in my current work.
Practical changes were scary, but necessary
We also had a lot of practical challenges to tackle. It’s been great for Dave being involved in a clinical trial , but we quickly realised that travelling really regularly from Scotland to Newcastle, where the trial was based, wasn’t practical. We made the decision to move to access better care in Newcastle and bought a bungalow so we could future-proof our home. It was a huge change but was the right one for us.
How we choose to live our life now
Fast forward to today, and we’re both doing really well. We’re feeling settled in Newcastle where we’ve met lots of wonderful people and found a lot of support. In addressing the practical elements early on, I think we’ve set ourselves up to be able to prioritise what we want to do now. Dave’s diagnosis has brought a new appreciation for what we have and the kind of life we want to build. It prompted my career change, and I now love what I do as a textile artist. This, in turn, inspired Dave and we’re both now self-employed in creative work, which allows for the balance and flexibility that we need.
A life-changing diagnosis can be really hard for couples, but overall, it’s brought us closer together. We know now to be really honest with each other about what we can do, physically and emotionally, and it’s given us both a new positive perspective on what we want in life.
