I touched on it briefly in yesterday’s post about Stephen Hawking, but one of the challenges of living with a condition like MG or motor neurone disease is the strain it puts on romantic relationships. In my experience, both partners in healthy relationships tend to be equally comfortable in their own skins and put feeling good about themselves first. If they don’t feel strong in themselves, the relationship suffers. Feeling this way with a condition like MG can be a challenge.
Any disease that changes you has the power to destroy self confidence. The eyes are believed to be the window to the soul, so when mine became affected I started to believe people wouldn’t be able to see me as anything other than ill. This initially crushed my self esteem.
When my myasthenia started to show through my eyes nearly 2 years ago now, it came on out of nowhere.
My other half and I had been watching Oz the Great and Powerful at the cinema not long after my 26th birthday, when I realised I was having to shut one eye to stop my vision from being double. My right eye had gone from normal to squint and, having never had any problems with my eyes before, I panicked. Thankfully Elaine had previously worked in an opticians and was still good friends with an eye doctor. Back at hers, she called the optician friend and he recommended I go to Moorfields Eye Hospital accident and emergency the following morning.
My eye took two weeks to go back to normal and, at that point, the doctors had no clue what had caused the temporary squint.
During that time, I shut my other half out emotionally to the point where I couldn’t look her in the eye. She was working away from home and I spent most of the time, when I wasn’t working, on my own. I was hiding myself away and waiting for the symptoms to pass. I wanted to do it on my own – thinking I would come back to her when I felt better about myself. When I felt more in control and able to be the strong person she knew and loved again.
Although we were friends for years first, my partner and I had been together for a less than nine months at this stage. That first year, often regarded as the honeymoon period, is a formative time for any relationship and I hated that I was adding such a condition into the mix.
One of the healthiest things about our relationship was how strong we were as individuals – I liked that we had our own fulfilling lives yet we sought to make space for each other. But what I hadn’t realised was that I had been shutting her out emotionally long before the MG – I thought I needed to be consistently strong and to keep a wall around any of my less attractive emotions.
With MG, I no longer felt like the confident, outgoing and independent individual she fell in love with. But instead of showing her this vulnerability, I hid it, and myself, away.
Elaine came with me for that first set of tests at Moorfields and has offered to come along with me to every scheduled appointment since then, without fail. She was there when I finally got the MG diagnosis, after 6 months of on and off symptoms, and held me as I cried in one of our favourite restaurants.
She told me never to repeat what I’d said when I suggested that she would be better off finding someone else during the days of limbo between diagnosis and treatment when my speech and swallowing also started to be affected.
Some time during this period I realised that if I didn’t let her in, I would be pushing away the best person for me. Not only that, but it would be my fault when I was alone and full of regret. I knew that if our positions were reversed I would be hurt that she didn’t feel she could be vulnerable with me – I knew I had to trust that she could still love me.
Myasthenia changes you physically and, if you let it, it has the power to change your personality too. I’ve been incredibly lucky to have a wonderful woman by my side who has supported me endlessly, loved me even on my darkest days and never allowed me to think less of myself because of my condition.
Don’t get me wrong – there are days that she’s ready to throttle me, we still have our stubborn independent moments and our ability to give each other space has saved many squabbles. But, when either of us are having a tough time, we no longer feel like we have to hide the more vulnerable parts of ourselves away and, as far as it’s healthy, we help each other when we’re not feeling at our best. In fact, the mutual knowledge that we will take care of each other has given us a much deeper connection.
I write this not because I don’t think there will be tough times in the future, but because I know that I’m with the right person to weather those trying days, weeks and months ahead.
For anyone not sure about whether to open up and trust – the worst thing that will happen is you’ll get hurt and then you’ll move on knowing that you tried. If you don’t give someone who loves you a fair chance, regret is a lot harder to get over.
Today’s photo is Elaine and I in our thermals before going to see a Premier League football game today. I’m not sure how she does it, but she manages to look glamorous in Lycra here.