Dear Diagnoses (For Julie Flygare’s Blog-a-Thon)

This is a letter in response to Julie Flygare’s Dear Diagnosis Blog-A-Thon. See details below!

If you could go back and speak to yourself on your diagnosis day, what would you say?“Dear Diagnosis” is a Blogathon inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day.

The rules are simple: Publish a post in response to this prompt on your blog between November 1 – 7, 2013 and email me the link at I will share the links at


“Dear Julie,
I know it’s a confusing day, but I wanted to tell you that…”



Dear Ilana,

Remember that time you thought you were just crazy for 19 years of your life? Boy did that suck. Having doctors tell you that strep throat lasting through three courses of antibiotics was normal, that needing to sleep 18+ hours a day was nothing to worry about—and that you were probably just experiencing a virus so you should probably just try to wait it out?

Those fuckers.

It’s cool though. Take a breath. I know that once Dr. Hirsch tells you that you have Primary Immune Deficiency Disease—and that he diagnosed it through a simple blood test that could have been given at birth—you’re going to want to punch someone—anyone in the face. But don’t. Because this is just the start.

Strap in, little girl. You’ve got at least two more diagnoses to get through.

Dr. Hirsch is going to march you across the street to the hospital to start an IV treatment right away. And your face is going to go from deathly pale to healthy pink. You’re going to eat solid food for the first time in a few weeks and together, you and your mom are going to cry with relief—even though your head will pound for the next three days from a residual migraine.

Despite the pain, the back-and-forth with treatment, the ups and downs trying to figure out a new and scary disease—this is the part where you stop feeling like a weak and hysterical young woman—and step outside of your body just far enough to see that you aren’t actually your disease. You are someone else entirely.

A year later you’ll notice a new kind of pain in your stomach. When you turn from side to side you’ll feel a stretch—like your left rib is glued to the right side of your pelvic bone. After months of torrential stomach-flares and being handed off from GI to OBGYN—Your gynecologist will finally take pity on you and agree to do an exploratory surgery to see if you, like many of the other women in your family, have endometriosis.

Guess what? You don’t.

Instead your doctor spends an unexpected four hours trying to cut apart the giant ball of adhesions wrapping all the organs in your abdomen together. When you wake up your mom says, “They finally found something.”

And when you wake up again the doctor asks, “how can you have adhesions when you’ve never had abdominal surgery before?”

And you don’t know, and that night while you recover at home, R.J sleeps on your bedroom floor while you struggle to understand if you’ve ever had any real control over your body at all.

The next diagnosis comes quickly in comparison. You’re twenty-two, you’ve just moved out and you’ve had a series of migraines like you’ve never known before. You have joint pain, black out every time you stand up—and struggle to breathe—even though you’re not having an asthma attack.

You stay at the hospital overnight with a heart monitor. When you walk to the bathroom and lean down to grab your IV tubing off the floor the nurse comes bursting in—wondering why your pulse just went from 79 to 155 in a split second.

POTS is what they’re calling it. And one year later a sleep study confirms your hyper-somnia may actually be Narcolepsy.

So back to 19-year-old you. Back to that moment where you were sitting on an exam room table feeling despondent, but confident that this infectious disease doctor was going to tell you that he just doesn’t know.

Back to that era of feeling small and weak and like this must be psychosomatic.

That isn’t who you are. Your disease is just a part of your body now, and now you know that.

Now you can be anyone.

-Yourself, Four Years From Now, Having About 74% of a Better Idea of Who You Are

PS–  This dress you bought for New Years that year? It’s going to disintegrate in the washing machine. (But you should still buy it because it was on sale for like $9.) Just a heads up.





4 thoughts on “Dear Diagnoses (For Julie Flygare’s Blog-a-Thon)

  1. What a beautiful letter, Ilana! I felt right there with you in that room. I love how you’ve described finally being able to separate yourself from your illnesses, once you had words for them. You have a unique way of describing things that I love. Thank you for writing and sharing. Thank you for joining the blogathon!
    Your friend,

  2. […] Let’s Feel Better – “Dear Ilana” […]

  3. carri levy

    There are so many dresses you should never have bought. I can only teach you so much.

  4. It sure took a lot of research to make an article like this.

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