What I Want My Family and Friends to Know About Meniere's Disease

Dear family and friends,

I suffer with Meniere’s disease. Meniere’s disease is a chronic, invisible, debilitating disease that has no cure. It consists of vertigo, tinnitus, hearing loss, ear pain, and pressure. I don’t know why I have it and I don’t know if it will ever get better. It’s hard to explain it to you when I don’t fully understand it myself. Every day is a constant battle for me.

Please don’t tell me, “But you don’t look sick,” or, “Getting dizzy can’t be that bad,” because you couldn’t possibly understand what I’m feeling. Please don’t tell me, “You’re overreacting,” or, “It’s all in your head,” because it is a very real disease that many of us go through but refuse to open up about for the fear of being judged or labeled “disabled.” Please don’t call me “lazy” or “clumsy,” I’m just exhausted and dizzy.

I don’t mean to push you away emotionally, but sometimes it’s easier to be left alone than to talk about what I’m suffering with. I don’t mean to brush off your advise, but telling me “don’t stress out” is nearly impossible when the stress is caused internally, not externally. There is constant stress and anxiety because I never know when I’m going to have a drop attack or a long bout of vertigo.

I didn’t mean to cancel our plans, I just couldn’t get out of bed that day because the world was violently spinning around me. When a Meniere’s disease attack hits, I could be spinning for minutes, hours, or days and I have no control over when it will cease.

I don’t intend to be rude when I decline your invitations to parties or movies; I just don’t want to put myself in a situation with loud music and flashing lights where I can possibly trigger an episode. I’m afraid of having a Meniere’s disease attack in public where I’ll feel vulnerable.

I am listening to you when you speak to me, but I didn’t hear you the first time because I’m losing my hearing in my affected ear. Please don’t get frustrated with me when I ask you to repeat something. Sometimes I just won’t ask you to repeat yourself. I’ll nod politely instead, even when I have no idea what you just said to me.

Not all days are bad, though. There are days where I feel completely normal, and I live for those days. I want to share those good days with you, but ask that you understand when I’m having a bad day. I want to have a good relationship with you, spend time with you, and open up to you about what I am going through. I appreciate that you’re reading this and learning about my struggle with Meniere’s disease. I’m doing my best every day to stay positive through this journey and your love and support mean a lot to me.

Sincerely,

Candi

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