74/365 – Things I’ve learned from having myasthenia gravis part two

Following on from yesterday’s post about what I’ve learned since being diagnosed with myasthenia gravis, here’s the second instalment of wisdom gained.

5. Care less about what others think

As I’ve expressed many times in this blog, the appearance issues people have around the facial symptoms of MG can be the tough to deal with. You are visually different – naturally people notice that change and some will comment on it. You become more self conscious in social situations because of this. You are prepared that if you momentarily forget about the MG, you may be reminded of it by others. 

The not caring what others think thing fluctuates for me, like the MG, depending on how resilient I’m feeling. However, I’ve found the amount of time I spend thinking about/caring what others think has decreased rapidly over the last year and a half. At this point a year ago I would more often that not socialise with sunglasses on – even at night. I would shy away from socialising with people I didn’t know well and I was reluctant to speak about MG with anyone other than my nearest and dearest. As you’ll appreciate from reading this blog, a lot has changed since then.

Aside from the physical, I’ve made peace with the fact that I have myasthenia and that makes caring less what others think a lot easier. MG is still about weakness for me – muscle weakness rather than personal weakness. 

6. Be part of a community 

The times I’ve felt most conflicted in life have been when I’ve been part of some kind of community. Different personalities need different environments and I prefer small groups. I find large groups difficult  because conversation is often kept on a surface level – people in large groups tend to get uncomfortable/make jokes if things get personal. I’ve just always felt like I don’t fit in with this or haven’t wanted to perhaps. However I’ve found the myasthenia gravis community, centred around Myaware, different. 

Sure there is plenty of non-myasthenia related chat, both in the young persons group and online, but because we have something fundamental in common I’ve always felt at ease. There is no shying away from difficult topics because that’s what we are there for – support. This level of understanding, that I’ve not felt in large groups before, puts me at ease.

7. Learn to be patient

Patience is still not a strong point of mine, but I have become better since my MG diagnosis. Not just more patient with myself, but with others. I’m more empathetic when others are speaking about their medical concerns/conditions – less quick to judge, more willing to understand (or at least on my better days).

As an extension of this, I think I am kinder – to myself and to others. When evaluating who I want to be as a person, kindness and empathy are two attributes that I put high up the list. While I don’t always manage, part of the development is that I’m better at not beating myself up about the times when I’m not perfect.

There you go – myasthenia made me kinder. 

8. Communicating what it’s like to have MG 

I had a kind email a few weeks ago from an ex partner, and friend, who had come across the blog. She wrote that it was great to hear that I was able to speak/write about how I was feeling as it was something that we had troubles around in our relationship. She was right – my myasthenia has made me a better communicator. Why? Because it was too much to cope with on my own. Reaching out made it bearable and I realised it wasn’t strong to grin and bear it. Fear of rejection, being misunderstood and of the consequences of allowing myself to be vulnerable stopped me speaking about my feelings in the past, but I’ve moved past these fears. Forget what’s  the worst thing that can happen by opening up, what’s the best thing? 

So there you have a few ways that myasthenia has shaped me for the better – I’m sure more will come to mind over the rest of the year so I’ll re-evaluate this at the end of my 365 days. 


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