What is the safest answer?

I am fine - It's a familiar mantra, one that rolls off the tongue with ease, yet carries the weight of unspoken worries and unexpressed feelings.

When "I'm Fine" Is the Safest Answer - When people ask how I am?

Not dramatically. Not consciously. It just happens. I reply with.

“I’m fine.”

“I’m grand.”

“Sure, no point in complaining.” 

The words come out before I’ve even checked in with myself. They’re a shield, the autopilot response kicks in. They close the door before anything real can spill out before I risk saying something I won’t be able to take back in a room full of people who don’t know what to do with the truth. 

At some point, living like this teaches you to question the question itself. When people ask how are you? I find myself wondering are they asking how I really am, or are they just being polite? Are they prepared for my honest answer, or are we both just following a script that keeps things comfortable and moving along?

Living with muscular dystrophy is relentless in ways I don’t know how to explain without sounding unbearable. It’s not just the physical losses, though those are constant and cruel. It’s the quiet terror of waking up and knowing your body is changing without your consent. It’s noticing what you can’t do anymore before anyone else does. It’s grieving versions of yourself in silence while still being expected to show up as the person everyone remembers.

Some days it feels like I’m watching myself disappear while everyone else carries on as if nothing is happening. The world continues to move around me, but I feel like I’m stuck in slow motion in every sense of the word. Yet it’s one where I force a smile and fake a laugh to become easier to be around so other people don’t have to feel uncomfortable in my presence.

I don’t do this because I’m strong. I do it because I’m tired. Tired of explaining. Tired of the looks people give you when you stop being palatable. Tired of the silence that follows honesty. Tired of pity dressed up as kindness. Tired of being framed as “inspirational” when all I’ve done is wake up in a body I didn’t choose. Sometimes all I can do is just lie because I don’t have the energy to hold my pain and carry someone else’s reaction to it. Imagine if I replied with the truth that do you know? My neurologist and physiotherapist had told me my walking days are coming to an end, and I need to prepare and start looking at wheelchairs! 

You see these are the things I don’t say because they feel unsafe to say aloud. Not because they aren’t true, but because I don’t trust what happens once, they are heard. I have learned that honesty doesn’t always bring support. Sometimes it brings judgement. Sometimes it brings labels. Sometimes it brings concern that feels less like care, and I’ve also had people in my life who are in total denial of how my body is betraying me. You wouldn’t believe how tired I am of being told you’re a tough little cookie, there’s plenty of fight left in you yet. Sometimes it not a motivation speech I want to hear, sometimes all I want is to feel safe and to be able to say aloud that I’m tired and really struggling with the enormity of it all. 

There are days when I honestly believe that if I said how dark things get, how trapped, frightened, and overwhelmed I feel, I wouldn’t be met with understanding. I’d be met with alarm, being treated like a problem to manage instead of a person who is hurting.

So, I edit myself. Constantly. Sentence by sentence. Feeling by feeling. The harsh reality is sometimes it becomes a performance. Acting like all is ok, when really, I’m far from it. 

Every time someone asks how I am, there’s a calculation: Is this a real question, or a polite one? How much truth can I tell today? What will this cost me if I answer honestly? Do I speak, or do I protect myself? Do I explain, or do I survive quietly? There is no right answer, only the one that drains me the least amount of energy and effort in that moment.

Don’t get me wrong I really do want to talk about muscular dystrophy and help raise awareness of this disease. Mostly I want people to understand that it doesn’t just live in my muscles. It lives in my thoughts, my plans, my fear of the future. Silence doesn’t create understanding. Awareness matters, people need to know. But at the same time, I need to have self-awareness and recognise that my self-care matters too. I need to sometimes protect myself from people’s reactions. Sometimes I don’t even know who I’m protecting when I stay quiet. Myself? The people I love. Am I holding back because I don’t want to hurt them, or because I’m afraid of what happens if I don’t?

People like stories about illness that end in strength. In resilience. In bravery. I don’t have that story. I’m not strong. I’m not brave. You’ll hear people say they are more than their diagnosis. I understand why that matters to them. But for me, my disease isn’t separate from who I am anymore. It has changed me. The more it takes, the less of myself I recognise. I don’t feel expanded by this experience. I feel reduced by it. Like pieces of me are being slowly erased and everyone expects me to be ok with that. 

I’m just me, a woman who is trapped in a body that doesn’t feel like hers anymore. A body that changes without my permission. A body I must negotiate with every single day just to exist inside a body I no longer feel safe in. It’s hard living in a body when the constant struggles outweigh the joy. But I know I’m meant to be grateful as it could be worse, but I don’t feel grateful or lucky. And why should I feel that way when I am genuinely devastated. 

 All I ever wanted was for this blog to be rooted in honesty, but honesty comes with consequences, and I don’t know where the line is anymore. I don’t know when being open helps and when it makes things worse. I just know this is my truth, my story, my journey and how I feel. 

And I need this to be heard.

Saying “I’m fine” is sometimes the only way I know how to survive in a body that is slowly letting me go, and I find that is the answer most people want to hear as they aren’t prepared or equipped to hear the real truth! At the end of the day,

“It is the body that I am living in that is making my soul suffer.”