"Beyond the physical: navigating the mental health challenges of muscle wasting conditions"
Mental Health Awareness Month gives us space to talk about the often-invisible weight we carry. For those of us living with muscle wasting and weakening conditions, mental health is woven into our daily lives, sometimes more prominent than the physical symptoms we’re taught to expect.
We often hear about the medical side of what we’re going through. But we’re not often asked about how we feel. What it does to our sense of self when our bodies change in ways we never expected. The unspoken grief that never goes.
This month is about bringing mental health out in the open and connecting with others. So we asked people in our community: ‘What aspects of your mental health do you struggle with most?’ and ‘What helps you cope on your hardest days?’
Some of us feel like we’ve disappeared from the lives we used to know and have become ‘less than’ who we used to be. Without even realising it, we can find ourselves withdrawing. We tell ourselves it’s easier not to go, not to ask for help, not to be seen in our more vulnerable states.
“Loneliness, isolation, and grief of what was and what is lost.”
Grief is a huge part of having a muscle wasting condition. We don’t just grieve the loss of physical strength, but the loss of spontaneity, of confidence, of independence. And as soon as we start coming to terms with the latest progression of our condition, we’re often hit with another loss, and the whole grief process starts again. It can feel like a never-ending cycle.
“I feel tired and exhausted.”
“Feeling trapped.”
Then there’s the fatigue that demands to be felt. But how do you explain to others that you’re not ‘just tired’? That not only does getting ready to leave the house take the same amount of energy from you as someone who’s just run a marathon. But that there’s a deep, wearying tiredness that comes from living in a body that demands so much from us. Stuck in a world that doesn’t always understand.
“It keeps reminding me of my inability to do most things and by the end of the day, things are still not done.”
When you have a muscle wasting condition, the list of daily tasks we have doesn’t magically reduce in correlation with our energy levels. If anything, we have more to juggle, with the addition of hospital appointments, endless forms and assessments. Not being able to finish simple tasks, watching time slip by as we try to manage our day around limitations, can be difficult. Because it’s not just about what we can’t do. It’s constantly having to bargain with ourselves that drains us. Having to think ‘if I do this today, I’ll have to do nothing but rest for the next two days.’
Finding coping mechanisms – creativity and staying in the present
All these mental wellbeing implications that can come with having a muscle wasting condition are completely valid and understandable. So rather than trying to bury them, it’s essential we have some tools to acknowledge these feelings and let them out. Because only then, can they become a quiet hum in the background, rather than all-consuming emotions.
Creativity is a haven for so many. You told us “talking, music, writing” and “journaling” are creative outlets you use to cope. That they help us understand our emotions a little better and allow us to release some negativity in a healthy way. And never underestimate the power of talking, whether to a friend, therapist, or someone who just gets it. It can break the silence we often find ourselves in.
Lots of people also said they find it important to “stay in the present.”
It’s hard not to think about what we used to be able to do, and sometimes there’s space for this, but it’s important to occasionally visit the grief, rather than live in the past. Staying in the present pulls us back from spirals of fear and sadness.
Equally, “trying to focus on the things [you] were able to do on that day,” rather than what you weren’t, is a necessary skill to learn. Over time we learn to be more compassionate with ourselves. To stop measuring our worth by our productivity. To celebrate the quiet victories others may never see.
Mental health doesn’t just exist in an awareness month
Mental Health Awareness Month gives us a reason to share our stories and the challenges we face. But these mental health challenges don’t disappear when May ends. While awareness is a start, what we really need is understanding. Empathy. Space to be honest without being told to ‘stay strong’ or ‘look on the bright side’ before we’ve had a chance to just feel.
To those in our community who shared their thoughts, thank you. You remind us we’re not alone. And to anyone out there struggling right now… we see you and we’re here for you. This month and every month.
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