Our Bodies, Our Disease, Our Choice!
- Siobhan McBarron
- Sep 19, 2025
- 4 min read
Two women, two lives, one fight!
Our Bodies, Our Disease, Our Choice.
Two women, two lives, one fight!
Every morning, two women from two different countries wake up to fight the same invisible war. One is Irish, the other is Swedish.
We have never met in person, but we are bound together by something we never asked for limb-girdle muscular dystrophy (LGMD), a progressive and incurable neuromuscular disease.
We are living in different places, walking different paths or at least we used to. Now walking is a memory for Pernilla, and a slow, painful struggle for me. I still manage to walk with the help of crutches, but struggle to walk long distances, stairs are a challenge, and even rising from a chair takes major effort. Pernilla now uses a wheelchair to get around, her muscles too weak to carry her through the day.
Pernilla’s story
"I’ve been confined to my wheelchair since 2011, after a bad fall broke my leg. I can’t stand and I need help with almost everything. The sadness that comes with this reality never leaves me.
Driving my car has always been my GREATEST freedom, my most cherished piece of independence. Behind the wheel, I feel like myself, not “the sick girl” others pity. But as my disease LGMD progresses, I know that freedom too will also SLOWLY slip away.
This journey is long and gruelling, filled with moments of frustration, fear and helplessness. Every day is a reminder of the limits my body imposes and the life I can no longer live the way I once imagined. Knowing there is no cure and treatment, and no real hope for improvement makes the future feel like a path of despair. It’s a constant feeling of being trapped, physically, emotionally and mentally while the world continues to be moving around me.
I can’t change the fact that I live with LGMD, but what I can change how people see me. I ‘m a strong woman, fighting for my rights. My right to live fully, and my right to end my suffering when life no longer feels like mine. I am more than my illness. I am courage, resilience and determination. I am me Pernilla".
Pernilla and I are two women in our forties. Same disease. Different stages of progression.
LGMD affects each person differently, with no set timeline, there is no rule book, but one thing is certain: decline is guaranteed. The disease only moves forward, never back.
We wake early, not because we choose to, but because our bodies demand it. Each morning is a negotiation with muscles that no longer cooperate. Simple tasks as getting dressed, caring for ourselves, simply getting ready for the day can feel like running a marathon before the day has even begun.
Our grief is ongoing, as we grieve constantly for the abilities we’ve already lost, and for the ones we know are next. Even breathing may one day require help. LGMD does not stop. It only takes. And yet, we keep going. We fight. We adapt. We endure.
But more importantly we also think ahead.
We know there will come a day when there is nothing left to fight for but pain. When our bodies are no longer our own, when joy has been replaced with exhaustion and suffering, when all that remains is waiting for the inevitable.
We want to meet that day with dignity not fear. We are not asking to die.
We are asking for the right to choose when we have suffered enough. Voluntary assisted dying is not about giving up. It is about reclaiming control over bodies that have betrayed us. It is about saying: this disease may take everything from us, but it will not take our choice.
Right now, neither Ireland nor Sweden gives us that choice. Instead, we are left with two painful options: to suffer through a drawn-out, undignified end, or to leave our home countries and travel abroad, far from our families and support systems just to be allowed a peaceful death.
That is not compassion. That is not dignity. That is not choice.
We make this plea to the governments of Ireland and Sweden: allow us access to voluntary assisted dying. Give us the dignity of autonomy when our quality of life has been irreversibly lost. Allow us to make the final decision about our own bodies, before pain and suffering take control.
We are fighting every day with LGMD, but this fight is no longer just against our disease. It is a fight for the right to choose dignity and peace. For the recognition that our lives, and the end of them, are ours to decide. At the end of that day we are two women, brought together by grief and suffering, standing side by side to ask for the right to choose voluntary assisted dying when life is no longer life, when there is no joy left, only pain.
Every day with an irremediable disease feels like a prison sentence. We are not asking for miracles, we are asking for mercy. For understanding. For compassion.
When the time comes, we simply want the choice to leave this suffering behind with dignity. Life is meant to be lived, not merely endured. No one should be forced to remain trapped in a body that has become a cage.
Why This Matters
We share our story not just for ourselves, but for everyone living with incurable, degenerative conditions. For everyone who deserves the option to decide how their story ends and not to have it dictated by suffering.
Join the Fight
If you believe in dignity, in compassion, in the right to choose, we ask you to stand with us. Share our story. Talk about this issue. Support legislation that gives people with terminal and progressive illnesses the right to make this most personal decision.
Because when there’s no cure and no way to stop the pain, the most merciful thing we can do is give people the freedom to decide when to say goodbye.
Two women. Two lives. One fight.
Let us choose the final chapter of our life story!