Empty Nose Syndrome: The Illness No One Has Heard Of

Dear Everyone,

I know my disease sounds bizarre. I know you’ve never heard of it before.

But I share the same symptoms as 800+ people in my Facebook support group. I wake up three, four, sometimes five times a night in pain. I have to breathe mostly through my mouth because it’s difficult for me to breathe through my nose.

For the past two years, I’ve somehow managed to pull myself out of bed, slap concealer around my tired, sunken eyes, and channel my inner Annie as I head out the door. I don’t know how I’ve been doing it. Every day I tell myself tomorrow will be better. Tomorrow I’ll get a better night’s sleep and won’t feel like I’m dying. Tomorrow my throat won’t hurt and wake me up all night. Tomorrow it will be easier for me to breathe…

I have what is called empty nose syndrome (ENS), a rare side effect of certain nasal surgeries. Many doctors actually don’t believe it’s a real thing, but for me and many other people it is… and it sucks. ENS can cause a host of different problems including difficulty breathing and a feeling of suffocation due to a “too open” nasal cavity. Sounds odd, I know. That’s why I’m writing this.

I want you to be aware of this disease, and its realness, and the side effects you can have from a routine surgery.

I want people with ENS to be believed and feel validated.

I want a reason to live, a reason to hope that doctors and researchers will produce a cure for us someday.

I want my family and friends to know how lonely, hopeless, regretful, and isolated I feel. I want them to know I don’t expect anything of them other than to just be there. Just be present with me.

I can’t turn back time and not have the surgery, although I really wish I could. All I can do is hope… that the sun will come out tomorrow.

For more information on ENS:

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Photo by Eli Defaria, via Unsplash