The truth behind the smile! Blog 15

Do not judge my life by the snapshots.

The real story behind my smile is most of the time I am faking it! It sounds simple, even a little hopeful. But for me, it is survival. It is the mask I wear every day, even when I feel like I am crumbling inside. I smile for the world, for my family, my friends, and especially for my husband as he is the one person who sees past the illness, who sees me. And somehow, that is the part that hurts the most. Because I wish he did not have to.

Living with a chronic illness changes everything. It is not just about pain. It is about losing parts of yourself, slowly, quietly, it is about the loss of my independence, my energy, the lack of spontaneity. The freedom you never thought to treasure because it was always just there. Until it was not. There are good days. There are hard days. And most days well they are just “okay.” That is what no one tells you the hard truth is that eventually, “okay” becomes something you fight for. Not the norm, but the victory. Its deep and heavy it is soul destroying to know this is your future. You will never again feel amazing or be good it will just be okay until you are not, and it is a hard thing to come to terms with and accept knowing eventually that it can never be anything more than that.

People see you smiling and assume you are fine. Because when you look well, they think you are well, and we play along. Especially women, as we have that ability to pull ourselves together, put on a bit of makeup, get our hair done, and smile like everything is fine. It is easier than explaining the invisible weight we carry. But beneath the surface, my body is screaming. Everything hurts. My energy runs out faster than I can refill it. My emotions swing wildly — like a trampoline being flung about in a storm tearing through the skies without warning. And when the noise stops, when the wind stops blowing than the anxiety and depression can creep in like big dark clouds. They never ask. They just appear the uninvited guests and are never too far away.

And now, as if that were not enough, I have been diagnosed with osteoporosis. Another blow. Another layer. As if surviving breast cancer was not enough — as if enduring the long-term effects of chemo and radiation had not already taken enough from me. For me there is no real finish line. No moment of peace. With every battle scar that is still visible to me and with every new ache, new lump, every appointment reignites the fear: Is it the cancer coming back? So, my life is navigating one living with an irremediable disease while also living with the fear of my cancer returning.

At the end of next month, I will start treatment for my Osteoporosis. This requires me having to get bone infusions. So every six months, another treatment, another reminder. Chemo saved my life, but it also caused a lot of damage to my body and 9 years later it is still continuing to play havoc with my body. My medical file keeps growing, my body keeps changing, and not in the ways I hoped. I am only forty-three. And yet sometimes, I feel ancient. Fragile. Worn down by things most people my age does not even think about.

But the hardest part? It is not the pain. It is not even the fear. It is having to be strong, not just for me, but for him. For the man who never let’s go of my hand my husband. I try to protect him from the worst of it, but if I am being completely honest, I still am protecting myself too. I am still drowning in the pool of denial. I do not think I will ever fully accept my diagnosis. At times I do I find myself mentioning the hard conversations about the future. It’s done out of love and not to frighten him, but to love him through honesty. To prepare him for what is coming, even though it breaks my heart to think of it.

We are currently making plans to renovate our home right now. So with every question from the design planner is another quiet reminder: I am not the same. I want accessibility, of course I do, but I do not want to feel like I am giving up on being young. Every ramp, every handrail added to the plans feels like a knife in my heart. Another little goodbye to the life I had before. I want our home to be my safe place to feel like our home, but I am also fearful and extremely mindful that I do not want it resembling a nursing home. It is a hard thing to accept. It is partly wanting to hold on to your old life, but it is also having to accept this is what your future self needs. For most couples renovating and planning your home is exciting but for me it is a bittersweet cluster fuck of emotions.

Grief in chronic illness is not just a moment. It is a constant, aching presence. You grieve the life you lost, not all at once, but in pieces. You grieve who you used to be, the dreams that now feel out of reach, the freedom that used to feel so small but now feels impossibly big. And just when you think you have made peace with it, something new comes along to remind you that the grief is not done with you yet.

So, if you see me on holiday, dressed up for dinner, smiling in a photo — please do not assume I am okay. I am trying. I am trying so hard to live while I still can. I want to make memories, not just medical appointments. What you see on Instagram is the highlight reel. You do not see the rented mobility scooter hidden in the background that helps me explore places I once had the ability to wander on foot. What I am not telling you is that I attended a birthday party on a Saturday night but was so exhausted that I gave all the next day in the hotel bedroom as I was physically too exhausted to move. You do not see the days I cannot get out of bed, the nights I cry in silence, or the mornings I dread because they bring more pain than rest. You get the version of me I want you to remember me by, it is me smiling.

So, the moral of this blog is do not judge my life by the snapshots of the good days.

Yes, there is a smile on my face. But do not mistake it for ease. That smile is my armour loosely stitched together with strength, sorrow, and love. I get up each day and fight my body with the determination, grit, and mostly with the stubbornness I still have. But I know deeply, quietly that one day, that fight may be too much. And that thought, more than anything, is what sits heavy in my heart.

So just remember I am not faking being sick. I am faking being well.

Until next time,

Siobhan McBarron xoxo