Yesterday when I walked into class, I took a seat beside my classmate and friend who is deaf. He and his interpreter were talking about this guy who kept asking questions about why he was deaf and about being deaf while at a party. My friend said that he eventually snapped at him and told him that he wasn't in the mood to answer questions because that's not why he came to a party. The interpreter and my friend asked me what I would've done in that situation. I simply replied with, "I would answer his questions."
In which I got a response from my friend, "So if you were at a party, drinking and just having a good time, you'd be okay with people asking you questions about your scar?"
I told him yeah and that it happens quite often honestly. I don't hide my scar, so and I am fully aware of the fact that I am going to get questions about it. Questions I am willing to answer. I did say though, that I answer the questions all similarly. I tell people when they ask, that I've had open heart surgery because I was born with a heart defect. My answer typical suffices their curiosity and they don't feel the need to ask more. However, some people do ask me about the defects that I have, what medications I'm on and other things. And at that point, if we are in a social setting and I don't want to answer, I'll nicely offer to meet up with them some other time to talk about it. That way if they truly want to learn about it and they aren't just being nosy or just don't know what else to talk about with me - it puts the responsibility on them to come to me at a later date.
I pointed out that I believe it is my responsibility as a CHD patient and fighter that I help raise awareness. Now do I like that sometimes my scar is the only thing that people notice about me? No. But part of education and raising awareness about an illness or a disability, is showing the people who ask these questions, that your illness and disability does not define you and it is not the only aspect of your life. I also think it is important to remember that if you snap at someone or make snide remarks about their questions, you may turn them off from wanting to learn more about the disease or disability. And that will never help the cause. That will never help educate. It will never help find a cure.
So while I understand that it gets old answering the same questions, it's part of our life. Whether we like it or not. We just have to make the best of it. I can say though, that the majority of people I have come across, once I answer their question and explain to them what a heart defect is, they are happy with the answer and then we continue on with the original activity or topic. Very rarely do I get people in social settings that continue on with questions - especially personal ones. But my advice that if that does happen to you - just nicely tell them that you'd love to answer their questions sometime later when you have more time and that if they want you can meet up sometime to answer them. It leaves the door open for you to educate them if they want to, you haven't been rude and possibly turned someone off to learning more and you've educated them already in the fact that there is more to you than just talking about your illness or disability.
Hope and Love,
Becca
