"We can’t choose the cards we are dealt with in life, but we can choose how we react to them”

A rare disease diagnosis can bring with it feelings of sadness, grief and frustration. Charley Reuben discusses how she addressed these feelings, reframed her mindset and removed blame to focus on the joy in her life. Shaped by the experiences of living with a rare condition, she has advice for other young people navigating a rare journey

In 2018, I was diagnosed with limb girdle muscular dystrophy (LGMD), a rare incurable muscle-wasting disease. 

After all the tests I had at numerous hospitals, I thought the final muscle biopsy would provide me the clarity and treatment I was waiting for. Unfortunately, the result being an incurable, rare disease flipped my expectations, and subsequently, my whole world. 

My mental health plummeted and I fell into a deep depression where I didn’t think my life had value anymore. When your disease is not only incurable but progressive too, it really takes away your hope and excitement for the future. How can I be excited for a future in a wheelchair, surely that is impossible?! 

However, after numerous antidepressants, therapies, CBT (cognitive behavioural therapy), counselling and psychosocial sessions, I began to realise that there is so much more to life than what you can do physically. I began to shift my mindset, with the help of journaling and meditation, towards someone who not only accepted her disability but also saw the positives in it. 

Although I would change my disability in a heartbeat if there was a cure, I try not to dwell on the “what if’s” because this is my reality that unfortunately I can’t change. However, I can change my mindset. I began to live by the phrase of, “we can’t choose the cards we are dealt with in life, but we can choose how we react to them”. Journaling methods such as identifying, “who is Charley…?” helped me realise that these cards have given me so many positives. As disabled individuals we are so resilient, and as someone with a progressive disability, my needs are ever changing so I am also so adaptable. 

When you have a disability that affects your independence, it is so easy to feel like you are “behind” everyone else. As my friends became more independent as they grew up, I became less as my muscles deteriorated. Social media doesn’t help, seeing people your age travelling, going out effortlessly, working full-time, dating or even just having energy to do day-to-day things, it can make you feel like you are not enough. And honestly, for a long time that was exactly how I felt. My confidence and self-esteem were almost non-existent. I didn’t like how my body moved, how different I felt or how physically demanding my disability was. Disability is often portrayed negatively, as something tragic or limiting, which it definitely can be, but then it becomes difficult not to internalise that. It can then feel like your life is tragic or something to be pitied and suddenly your whole identity feels tragic. 

Slowly, I began to understand something that changed my life: my disability is not my fault, and neither is it anyone else’s. It’s not something that I asked for, I was just unfortunately dealt these cards in life, so why do we punish ourselves for it? Why do we talk to ourselves like we are to blame for needing rest, mobility aids, breaks or support? Once I started unlearning that, my relationship with myself improved. I began to appreciate what I could do and who I was as Charley, instead of constantly grieving what I couldn’t and everything I was not. I started being patient with myself because I am still learning to deal with this too. This is something every disabled young person deserves to give themselves.

I also learned how important it is to reach out to people. For a long time, I thought I had to handle everything alone. I didn’t want to burden anyone, especially my family, who already do so much for me. But the day I started speaking more openly about my difficulties, I realised how relieving it was. People want to help. People want to support you. You are not weak for needing help sometimes, we all do whether we’re disabled or not! 

And when you let others be there for you, life becomes a little less heavy. That is something I want every young disabled person to know. You are not alone, even when it feels like you are, sometimes you just have to let people learn about you and be patient with them.

The biggest change came when I found joy in things that had nothing to do with my physical abilities. I stopped placing value on how active I was in a day or marking my days as “good” vs “bad” depending on my ability to do things that were difficult. Instead, I found things that brought me joy and satisfaction like journaling, reading, writing, spirituality, manifestation, creativity, baking, cosy evenings, seeing my friends… I realised I did not need to climb a mountain or run a marathon to feel fulfilled. My joy could come from slower moments, emotional depth, compassion, humour, kindness and all the parts of me that had nothing to do with my muscles.

I am still navigating life with a disability, and some days are harder than others. I still have moments where I question my future or feel frustrated with my body, and that’s okay. Healing isn’t linear, confidence isn’t permanent and self-image is something I have to work on constantly. But I am proud of how far I’ve come, and I’m proud of the woman I’m becoming.

To any young person reading this, especially those with disabilities: please be patient with yourself. Your body is doing its best. You are doing your best. You’re not falling behind because this is your journey so you’re growing at your own pace, in your own way, and that is something to be proud of. Don’t let the world rush you and don’t let society’s ideas of “normal” or “worthy” shape the way you see yourself.

And if you ever feel alone, overwhelmed or unsure of where to turn, my messages are always open. If sharing my story helps even one person feel understood or a little less isolated, then it’s worth every word. We deserve community, compassion and spaces where our experiences are not only acknowledged but valued.

Living with LGMD has challenged me in ways I never expected, but it has also made me strong, empathetic, reflective, adaptable and hopeful. Grieving my physical abilities gave me a perspective that I would never have had otherwise. I now practice gratitude, emotional intelligence and appreciating the little things in life that most people overlook.

Although my life looks different, it doesn’t mean any less. And although things may be harder or slower for me, it doesn’t mean I don’t deserve to take up space in this world because we all do.

If anything, it means I’ve learned how to build a life that feels meaningful, not despite of my disability, but alongside it. Part of that life may be using these cards I’ve been dealt with to the best of my ability and become the best version of myself like spreading awareness on raising your confidence as a disabled woman.

I hope this is valuable and reminds you that not only do you deserve to take up space and be a voice in this world, but you deserve to enjoy it and live life to the fullest, however that may look for you. 

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