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The 5 Stages of Chronic Illness No One Tells You About

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When I was 13 years old I had just re-learned how to walk. I lost the use of my limbs when I was 12; having finally regained their use I thought my life had finally gotten back on track. Then I fell ill again. Shortly after, my beloved Nan passed away.

Seven years on, my life is finally starting to make sense. Something became very clear to me: dealing with being incurably sick was hard. There are many things that doctors do not tell you when you get diagnosed. If I could go back to my 13-year-old self and tell her everything is going to be OK, I would. But I can’t. So this is a letter written through the naive eyes of a chronically ill 13-year-old with the hindsight of a 20-year-old who’s on her way to figuring this all out.

1. Denial

I just got out of the doctor’s office Nanny; he told me there’s no cure. It’s been running circles in my mind sending me dizzy with confusion. I don’t know what he means, but it must be a mistake. The person they were referring to wasn’t really me, was it? No. They must have got the notes mixed up. This isn’t going to be my life from now on. Progressive? What does that mean? It’s not going to
get worse, it can’t. This is all a big mistake. They don’t know what they’re talking about. If I ignore it, just keep on going it’ll go away eventually. Right?

2. Desperation

Google search after Google search, miracle cures. “I ate an avocado a day and was cured in six weeks.” Yes! Juicing diets, organic, vegan. No solid food, eat at precisely 12:07 every day. This is how I will get better, Nanny. This pill will help me. My friend’s mum’s boyfriend’s aunt said she knew someone who had a friend with my condition and they made a full recovery. There must be something; this isn’t my life now. Is it? Nanny?

3. Grief

Remember when I could dance all day without getting tired; run through the meadows like a fox at dawn? Endless energy, pain-free. My body functioned as it should; dancing all day was a breeze. Food, food, all the food! I miss your food, Nanny. Nothing too rich or too filling for my tummy. Nights of laughter, days of fun. I wish you were still here, Nanny. I feel like I’ve lost two of the people closest to me. You, of course, and the person I used to be. The grief is killing me, Nanny. It’s eating me up. My chest is hurting now. I can’t breathe. Please someone help me. Drowning in despair. I don’t know how I can get out of this, a black hole has swallowed my soul and I don’t think I can get it back. I just wish… oh, how I wish I could see you again. How I wish I could be me again.

4. Acceptance

I don’t think… I’m not convinced my life is over Nanny. OK, so it won’t ever be the same again, but that doesn’t mean it has to be all bad right? I may have to pace, plan and be careful with all I do, but I can still be happy. I’m still me. Aren’t I? I’m the same but different.

5. Flourish.

I have met so many amazing people, Nanny! They understand me, they help me grow and love me for who I am! I can dance now, Nanny, maybe not the same as before, but just as good, just in a different way. I can breathe, I can play, I can laugh!

I can love.

You’d be so proud of me, Nanny. My heart is slowly mending, each day, each new memory gluing it back together. The love of those around me filling me with the sweet, sticky glue that is joy and love. I have a future! I got offered a place at university; I’m going to have a degree! I got a job, I made friends, and I helped people! Life wasn’t over when I thought it was, Nanny.

It had just begun.

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Lead photo by Thinkstock Images

Originally published: December 5, 2016
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