Guest Post – Nechama Sklar

I have wanted to have guest posts for awhile now and I am so pleased to feature Nechama today. We met through the Chronic Illness Bloggers Network. After her poem is a small write-up on her and I encourage you to check out her blog The Life You Gave Me. Now, here is Nechama’s beautiful and heart-wrenching poem.

Lydia!

Did You Know It Hurts So Bad When You Say “You’re Not Sick”?

You tell me that i can’t be sick all the time,

Did you know that that makes me want to run and hide,

Want to bury the pain inside,

I wish it wasn’t this way,

Only i know,

That this is real,

This is me,

If only i could make it stop hurting,

If only i could pinch myself,

discover it’s just a dream,

I wish this wasn’t,

My reality.

You tell me it’s all in my mind,

Don’t you know just how much i try,

To make it stop,

To force it out,

But it’s so real,

Can’t you see,

I’ve come to accept.

This is my reality.

You tell me I can’t hurt so bad,

But If you had to live this life you would go mad,

If you had this pain,

You would scream,

Crawl into bed,

Try to forget everything.

So don’t tell me,

I’m not a warrior,

Because trust me,

I’m a fighter,

Don’t tell me anything,

Can break me down,

Because trust this body,

And I’m still around.

So don’t tell me all those hurtful things,

Instead, look at me,

See all i have been through,

And tell me,

That I am amazing.

Hi, I’m Nechama Sklar and I am a chronic illness warrior.

I’m a 17-year-old teen ultra-orthodox Jew who lives in Brooklyn, NY.I have MCAS , or mast cell activation syndrome- an allergic disorder that makes me allergic to- well, just about everything.

I have a primary immunodeficiency – a very long word that basically means I am also sick with one kind of infection or another.

I also have asthma and some form of autonomic dysfunction we are working on a diagnosis for.

I started my blog at a really low point in my life. I was in the hospital, physically unable to eat or drink. I would have given anything to eat or drink just one drop then.But the doctors in the hospital told me it was anxiety and were going to send me to an eating disorder clinic. I felt totally alone. i needed to share my feelings. i needed someone to hear me. And so, i let out my feelings to the world wide web. Thankfully, i got out of there safely,eating and drinking and not another word about eating disorders. Since then, my vision for my blog has expanded to include spreading awareness for all kinds of chronic disorders and providing support, coping skills and health tips for others with chronic illness.

I also run 2 online groups on facebook for those with chronic illness:teen mast cell warriors– for support, advice and encouragement for others teens and tweens fighting with  a mast cell disease

and let’s stay positive with chronic illness – a group with positivity challenges and quotes for staying happy with chronic illness.