Things we wish you understood about tinnitus

This is an emotional article for me. I wrote it because I started to remember what it was like when I was really struggling with my tinnitus. Thankfully my husband was very supportive, but I still remember the hurtful comments that managers, colleagues, friends and even some family members made. This wasn’t usually because they wanted to be mean. It was more because they simply didn’t understand what tinnitus was, and how it made me feel. To be honest, I struggled to articulate it too.

So here is my attempt to suggest some mindful and wise responses to five comments we often hear that might upset you, or make you want to bite someone’s head off (or both!).

These responses encourage you to be assertive, self-compassionate and accepting of your tinnitus situation as it is right now.
You will need to tweak them to your particular circumstances, but I hope you find them helpful.

Misunderstanding 1: it can’t be real if the doctors can’t fix it

Tinnitus is definitely real. It may take place in my head, but it’s not imagined. Specialists have confirmed I have it, even if they can’t touch it, feel it or cure it. While there may be no cure now, there is a lot of money being ploughed into research to find one. Until then I am doing the best I can each day to manage it well, and I would love your support to do that.

Misunderstanding 2: if you look fine, you must be fine

Like many chronic conditions, tinnitus is an invisible illness. So, yes, most days I will look fine. But that’s often because I’m really good at wearing a mask so that I can live as normal a life as possible, and people don’t worry about me. If I didn’t wear this mask, there would be days where I would struggle to function at work and at home. I don’t want to hide all my feelings from you, but I also don’t want to overwhelm you.

Misunderstanding 3: if you did it yesterday you can do it today

Tinnitus alters frequently. The pitch, volume, tone, and type of sound can change from minute to minute, never mind from day to day. So while I might have been happy to sit in a noisy café yesterday because my tinnitus felt manageable, that won’t necessarily mean I can do so again today. I try and do as much as I can, so tinnitus doesn’t define my life, but sometimes I have to say no. This is one of the major challenges with tinnitus I have had to learn to accept and work with.

Misunderstanding 4: you’re always changing plans – you’re unreliable!

When we plan to go somewhere I want to go there as much as you do. But between the time we made the plan and the event coming round a lot can change. I might be exhausted because I’m struggling to sleep with my tinnitus. My tinnitus might be feeling more intrusive than normal. We might have gone to a noisy event the day before and my tinnitus has spiked. I’m as frustrated as you are that I can’t go. If I possibly could, I would.

Misunderstanding 5: it’s just an excuse not to [insert task or activity here]

I wish I could go and watch Jonny at the basketball game. But from experience I know the sound in that enclosed space could spike my tinnitus for days. By asking you to go instead I’m being practical and realistic. I’m very happy to take the children to other activities where I’m more comfortable with the sound levels.

“Because one believes in oneself, one doesn’t try to convince others. Because one is content with oneself, one doesn’t need others’ approval. Because one accepts oneself, the whole world accepts him or her.”
Lao Tzu