The Truth About the Girl With Chronic Illness Who's Wearing a Brave Face

There may be an assumption made by some that after 31 years I would be able to cope with my congenital, chronic illness. I have no doubt that anyone who knows me has thought to themselves at some point, even recently…

“She looks really well again today.”

“She copes with those hospital stays like a pro.”

“She is one tough cookie, I couldn’t deal with all those appointments and tests!”

Many people say these things to me on a regular basis and I have no doubt it is almost always impossible to tell that I am struggling or suffering. This is because I have been honing the art of deception forever. I often pride myself on my ability to tell the most convincing lies (do not ask my parents about the “lost” car keys and the night we nearly lived in a farmyard!) I learned to lie and deceive from day one in order to hide my condition and confusing symptoms and smuggle my way into the “normal” herds of life unseen, to make sure that I wouldn’t scare people away or make them feel sorry and sad. To make sure my family didn’t have to worry about me – it doesn’t take many agonizing goodbyes at the school gate for you to stop wanting to see your mom crying and desperate. Deception has always been my go-to strategy for survival.

However, something has changed. The last three and a half years of my life have been the hardest yet, with more needles, drugs, A&E visits and surgeries than ever before… and it’s still not over. Relentlessly, it has worn me down and I am all in.

The truth is I am struggling to cope with my chronic illness every day.

I no longer feel strong. I no longer have a sense of achievement or power within me just because I have experienced “the struggle” and defeated the odds. I can no longer identify with my “Heart Girl” label with determination or display my Badge of Survival with pride. Even with a lifelong, stark awareness of my own mortality, I am losing perspective on what is important. I am sinking in the chaos and misery and I am forgetting that I am lucky to be alive.

What I have come to realize now, though, is the real reason for my years of deception. The reason I have been putting on my brave face every day. It’s not for the concern of my friends and family and it’s not because I have wanted to fit in, but simply so I could protect myself from the truth, the hard reality of the hand I have been dealt.

For 31 years I have been putting on my brave face for me.

It has protected me.

It has allowed me to convince myself that everything is OK.

It has allowed me that wonderful coping mechanism of denial.

I thought I had been lying and pretending for the sake of others but after all this time, I realize it was for me. Now that I know this, it is apparent it will no longer work and I have come unstuck. My go-to strategy is no longer available, deniability no longer an option.

So now for the truth.

My chronic illness is winning.

I am being defeated.

I may not be strong enough.

I am losing control.

I am fearful and cowering.

Not a great place to be I know, but here is my beacon of hope…

I have come to realize that it is harder to say “I am afraid” than “I am brave.”

Therefore, I take courage that, for now, I can tell you I am afraid.

(So no more brave face…. just brave.)

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