A Letter of Complaint to Meniere's Disease


I cannot address Meniere’s disease as “Dear.”

I will say instead…

Attention, Meniere’s disease:

On behalf of an incredibly large, silent and invisible crowd of people all over the world who live with the stress, anxiety, pain and confusion you bring to each of us so freely, I’m filing a letter of complaint.

I wish you, Meniere’s Disease, could know how horrible it is to never have a moment’s peace and quiet from the screaming tinnitus we all experience. I long for a quiet time in my life when I’m not overwhelmed with the constant din of rushing traffic or water shooting out of a fire hose or whistles or jet engines. Add in normal daily sounds — like music, conversation — and imagine the confusion I must sort through just to figure out what to say to the person I’m standing next to.

I wish I could hear better above the tinnitus sounds, but you, Meniere’s disease, also have stolen much of my hearing. Take your medicine, you say? Which one? The medicine that makes me sleep and useless or the one that makes me dizzy and useless? No thanks. I choose to live the best life I can, and it has no room for drugging me into oblivion. I prepare for the possibility of deafness by learning to read lips and studying sign language. I research daily for ways to manage my disease; I’ve found head-positioning exercises and some essential oils that seem to help on the bad days. I wont let you beat me down, Meniere’s disease!

You decided that, after 18 years of my surviving your terrible deafness and tinnitus symptoms, you’d return the full gamut of symptoms to me, and…wham! The vertigo started over with a vengeance, taking my independence and freedom of movement. Now, I’m forced to be homebound when the dizziness is severe or cautiously using a walker on days it’s less severe. On days when you forget to show up, I feel like running and singing; I know I must take advantage of the short time you’re away and not making me dizzy. I run errands, and do all I get behind in when you’re fully present. I can never forget you. You constantly scream, “I am here! I am here!” in my ears every minute of every day and night.

You interfere with my normal active life, even stopping me from time to time in the midst of my activities. You’re unpredictable. And, because its hard to explain this disease to anyone, hardly anyone knows you exist in me. It’s even harder to find treatment. I feel like the doctors and nurses think I’m malingering if I do complain or seek help again. Yet, it was doctors and nurses who gave a name to my hearing loss, my tinnitus and my vertigo all those years ago. The symptoms are hidden; there’s no cast or crutch or bandaged wound for a person to see. I’m always in hopes that a cure is coming.

You, Menierre’s disease, offer no visible sign of any malady. Your outward silence laughs loudly and wickedly in my ears. But I  know you’re there constantly, and I know the game you play, trying to wear me down little by little. I have one thing to say…

You, Meniere’s disease, may win some of the battles, but you will not win the war. The cure is close, and awareness is happening more each day. You may take my quiet away, but you can never steal my peace. My peace comes from within, from my faith and from my determination to not let you win.

No thanks! You, Meniere’s disease, are not welcome.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Related to Meniere's Disease

5 Life Lessons I’ve Learned From My Daughter’s Rare Disease

Dear Mitochondrial Disease, When you came into my life eight years ago, I started preparing to go to war. I wanted you out of my daughter’s body, and I was willing to give up everything to do it. I went to the specialist, walked away from my career, relocated to another state and cut those [...]

Dear Illnesses, You Made Me Into a Different Person. Thank You for That.

Dear Myalgic Encephalomyelitis and Fibromyalgia, I was a normal 15-year-old when I first met you. I wanted to be a vet, I hated school apart from my art lessons, I wanted to stay out late with my friends and I enjoyed being onstage. You turned all those joys upside down and took them away. I went from [...]

My Daughter’s Rare Genetic Disease Taught Us the Meaning of Strength

Dear Cystinosis, It’s been about a year and a half since you entered our lives, and I’m still not entirely sure how I feel about you. I will probably never forgive you for choosing to live within my innocent baby girl. She is the most precious thing in my world and does not deserve to [...]

A Message for My Daughter’s Tuberous Sclerosis

Dear (not so dear) Tuberous Sclerosis, I despise you. You’ve brought pain to my family since the day your name was so gravely spoken. Your “incurable” tagline ripped through my heart like a million razor blades, tearing it to shreds. You’ve made me doubt myself and my ability to care for my own daughter. Your [...]