How Being Diagnosed With Muscular Dystrophy Changed Me
When I was diagnosed with GNE Myopathy, a form of Muscular Dystrophy, I felt strongly that I did not want this progressive, untreatable and debilitating condition to change who I was.
Prior to this, I wasn’t sure that a personality could actually change. I had always acknowledged that we grew as people as we got older, and went through different experiences. But I very much saw that as a development or extension of who we already were. And so I didn’t want illness to change me, and I wasn’t sure it could. This was perhaps naive.
A non-scientific assessment of ‘personality’
I think that there are fundamental parts of personality that will always be present. For example: I am optimistic, sensitive, caring, a poor timekeeper and an avid reader. I compulsively seek solutions to problems and hate the thought of limitations. I’m a dreamer, prone to escapism. I feel incredibly shy around new people, but can get kind of loud and excitable with the right combination of loved ones and alcohol. I am simultaneously fearless and terrified.
I am grateful for some of these aspects of my personality, while I’d describe others as ‘my flaws’. But I believe that we wouldn’t have our positive traits without the negative ones, and so it is healthy to accept them all and work to minimise the impact of our flaws as much as possible.
It seems that our personalities do sometimes evolve and change, often as a result of life experiences that are almost seismic. Huge changes, upheavals or upsets can feel like they have the power to change our personality, even if they occur in adulthood.
I believe that this has happened to me; I’ve changed as a direct result of things that have happened in my life. The changes I refer to are possibly extensions or reflections of some elements of my life-long character, but I don’t believe that they’d have come into fruition without the formative events that occurred in early adulthood, including my diagnosis.
Psychology Today backs this up, stating that “the general consensus is that personality is shaped by early life experiences and tend to stay stable over time.... [but] personality changes can still occur depending on new life experiences. People who have experienced severe emotional trauma or life-changing events can experience significant personality changes.”
How my diagnosis changed me
I’m self-aware. It’s taken some really low periods, and a lot of work as well as counselling and cognitive behavioural therapy, but I do feel like I now know myself better than ever.
Unlike other events in my life, because my diagnosis was unique to me, it really has driven an increase in self-awareness. I’ve had to consider who I am, and how I can still be myself despite declining health and mobility.
I better understand where my vulnerabilities lie, how much I can tolerate, and what I need to lift my spirits when required.
I have strong foundations. I am a people-pleaser by nature, and because of that I haven’t always had good boundaries. Additionally, I had never really thought about what my values were - I’m sure they were present, just instinctive rather than conscious.
Since my diagnosis, life is more difficult to negotiate, and my future more limited. So I took stock, and developed strong foundations.
In evaluating what I value in life, work and relationships, I was surprised that my simplified approach could lead to a future I had previously dismissed, and that this doesn’t have to be a bad thing. Simultaneously, I had to reconcile the fact that I will no longer have the opportunity to realise certain dreams, and began to understand how I could still be true to my values regardless.
In line with this, I could see more easily where I had let things in my life diverge from my values because I was more interested in making other people happy than looking after myself. As such, I outlined boundaries to protect myself; feeling more vulnerable than ever after my diagnosis made this incredibly important. I protect myself first now, regardless.
I find joy in the small things. I’ve always been pretty optimistic, and tried to see the good in everyone and everything. This grew when (amongst other things) I lost my ex-boyfriend to cancer in my early twenties. I gained a strong sense of perspective, which drove me to seize opportunities and enjoy the little things.
At this time, I still felt like I had a future full of possibility ahead of me. It wasn’t until my diagnosis limited this future that I began to consistently appreciate that happiness lies in the frequency of small joys, rather than the intensity of the big things, and the promise of what may come. I used to chase big dreams, but now I value sustainable peace and contentment every day.
I am more self-confident. A strange one in light of my increasing disability, and one that is still a work in progress. Truth be told, I am more self-conscious physically, embarrassed by the way my body now functions. But I have worked hard to become more confident in who I am. Although I repeat, still a work in progress.
Further impacts of my diagnosis
Existing personality traits can be exacerbated or enhanced by seismic events in our lives.
I’ve always been chronically late (and chronically ashamed of it but apparently unable to change), but now that my legs move at a snail’s pace and I am prone to falling, as well as many other related issues, it is worse than ever.
My innate sensitivity is more pronounced than ever, but so is my ability to be compassionate. And while I have always been fairly courageous, I now follow through with brave ideas rather than just dreaming about them. This is thanks to the stubborn determination that has revealed itself, and keeps me moving towards the things that I want from life.
It is the emergence of this stubborn determination that I am most grateful for. It motivates me to at least try to do the things that feel important to me, and it motivates me to keep going, and keep living. It reminds me that I don’t want to be beaten, and that regardless of what happens, I still have the power to enjoy my life and work.