I often feel that our loved ones really mean well but struggle to know how to converse with us post brain tumor diagnosis. There can be a lot of fumbled converstaions. More than one person in my life really put their foot in their mouth trying to talk with me about my situation.

In these moments, I really try to focus on the person’s intent and give them as much grace as possible. It can be really hard to understand something as difficult as a brain tumor if you haven’t faced a similar situation. But I wanted to share a story of one of my pet peeves, in hopes that it could help others looking to give support.

I was chatting with some folks and making small talk. In the course of the conversation, I made a joke that great sleep is one of the best perks of being deaf. Looking concerned, they immediately rushed to reassure me that I am not deaf-  that I am fine and can hear and it’s ok.

This is exactly what I don’t want- a contradiction of my experience. I get to define my lived experience. I don’t want you to tell me what my life is like. I get to choose my labels.

I want to be able to talk about my life without having to cope with your large emotional reaction. I understand that deaf can feel like a loaded word to some, but I want to be able to share stories without worrying that the realities of my life upset you. I am not looking for pity when I talk about my lived experience, but I don’t want to have to edit what my reality is like.

I read about a study for PTSD, and the study shared that the more people talked about their traumatic experiences the more they could let go of them and process them. Talking about the hard things is proven to help. I want to be able to discuss my life and be real, not have to avoid talking about topics like my hearing loss.

I also feel like you aren’t actually listening to me when you respond to a joke with reassurance. My tone should provide clues for how to take what I am saying. If I am smiling and laughing I am not looking for you to make me feel better.

In a situation where I make a joke about how being deaf gives me great sleep, some great responses would be, “That’s awesome!” or “I bet!” or “I can’t imagine.” Like anyone, when I make a joke I hope for a laugh. I love to laugh at my life so we can all get a kick of joy out of the ridiculousness of being human.

I totally understand that some people in my situation would not identify as deaf, and that is just fine. However, I choose to sometimes call myself deaf (not Deaf) because the term I most like for my hearing loss is single sided deaf. In any situation where my right ear is blocked (such as laying on a pillow), I truly hear nothing. Folks do not always understand deafness is a spectrum and a wide variety of hearing situations can feel represented by the word deaf.

When someone corrects me on how I describe my own life it results in making me feel isolated. I feel misunderstood, and at times not even welcome. It shuts down an avenue for open communication. With enough repetition, ultimately I will choose to no longer confide anything with someone who responds that way.

Everyone handles coping with difficult topics like hearing loss in a different manner. There isn’t one right way to describe your medical issues. I typically want to talk about it. Some people prefer not to mention it. The important thing for any conversational partner to understand is that the correct methodology is to follow the lead of the person who is describing their experience.