Some people don’t care for the term disability, but I do feel it is a useful term for my life. Outcomes can vary a lot for people who have vestibular schwannoma brain tumors, but I would describe both my single sided deafness as well as my balance problems as disabilities. While I can typically do just about anything I want to with my balance, it does take a lot of extra planning, effort, and focus. I can do yoga on a stand-up paddle board, but I plan to fall in the lake (and that’s fine). There are some things I just plain cannot do- like a strobe light room in a haunted house. My hearing loss is similar. I can hear very well in quiet situations, and I really struggle in situations with a lot of background noise. Hearing is always very fatiguing for me. In general, I feel both my hearing loss and my balance issues are well managed in my daily life, but they certainly exist.

I have often felt that the fact that my disabilities are invisible is a double-edged sword. On the one hand, I have the choice to disclose. I can choose not to let people know or to share the information. On the other hand, people literally never assume I have a disability. I was attending the National Hearing Loss Association of America convention and had multiple interactions where the person I was speaking with assumed I was a hearing loss professional and that I did not have hearing loss. Other people assuming I can’t have a disability has led to many uncomfortable situations, as poor assumptions are made.

I was once attending a professional event where it was challenging to hear. As I often do, I chose to wear a “Hard of Hearing” pin to help advocate for myself in a situation where I struggle with hearing. Someone I had known for years noticed the pin and asked me, “Are you really hard of hearing?” I was frustrated because why on earth would I wear the pin if I wasn’t hard of hearing?! Did this person who had known me for years think I was capable of joking about a disability? I have felt judged for being a rude millennial and accidentally ignoring people because I haven’t heard them. Luckily, my family, my coworkers, and my friends have become adept at helping smooth over moments when I missed something and helping the other people understand I didn’t hear them. My people are awesome about advocating for me.

I have thought about trying to increase my hearing loss visibility. If I wear my hair in a ponytail, my hearing device is a lot more noticeable. I often do that at work. I have found that not only do people seem to offer me more grace on occasion, but it also has given me more opportunities to connect with other people who have hearing loss. I had a customer tell me that their daughter was so excited to see my hearing device because it was like hers. She hadn’t met many people with them, and as a teen, that felt very isolating. Seeing my device on proud display helped encourage her. Other people have been considering getting a device like mine and use it as an opportunity to ask questions and hear my story. I enjoy connecting with people, and that makes me think about trying to show my device more regularly.

The really important piece of managing an invisible disability is self advocacy. Advocacy is exhausting, and I am still very much a work in progress in this arena. I am typically a giver and a people pleaser, which is not an awesome combination for asking for accommodations or setting boundaries. My hearing loss is helping me practice those skills. Some days, I can’t do it for myself. But on those days, I tell myself that I need to speak up for the next person with hearing loss. That can be enough to help strengthen my determination to ask for what I need. It often feels like a big deal to me, but to someone else, it is frequently not a huge ask, and they even love feeling like they can help. I have to remember that it is important to give other people opportunities to help me, just like I love to help others. That is really what community is all about.

Invisible Disabilities Week