Over the last few months I have seen a ton of posts on social media making fun of Misophonia. It saddens me to see them when I log on. It hurts my heart to know that something that I can’t help — a neurological condition — is funny to some just because they might not understand it.
Words hurt and when someone doesn’t even try to understand what you are going through that is even worse. It makes you feel like you are less than. It makes you feel — especially when you know the person well and care for them — that the don’t care as much for you as you do for them. Now I have been lucky in that regard when it comes to family. For the most part all those who are close to me have made an effort to at least listen when I tell them what it is. Some make a larger effort than others, but all in all it’s been a good chance for me to educate them on the condition.
My daily life consists of headphones and earbuds. Always with me and on the off chance that I have forgotten them we have to go back and get them. I wear them when I am sitting at the dinner table with my family so I don’t freak out. I wear them in public so I don’t rage on someone I don’t know. I wear them in the shower (yes the shower as my earbuds are waterproof and made for athletes who use them while swimming). They weren’t cheap and not everyone will be able to drop around $300 on a set of earbuds, but it is better than the alternative of having none or paying out of pocket — if you can find a company that will sell to you — for a high tech hearing aide that you can stream white noise through. Those bad boys run around six grand per ear.
I no longer go to places that we used to frequent because I know that they are triggers. When I think about it, I guess they always have been in some way and they just got to be too much. I can no longer put myself in that situation when I could be hanging out in a comfortable environment. It can be isolating and it makes me sad at times. I see women in the neighborhood hanging out and having girl time. I get invited and in the long run I think of a “not as crazy” excuse to not go. I long to be able to spend time with some good girl friends, somebody other than myself and my precious Layla. It makes my heart hurt that in 90% of the situations I can’t do. To be honest, I would rather not go at all than go and have people think I’m weird or not get invited again. If I just don’t go, then I don’t know what I’m missing out on and it takes a little bit of the sting out of the whole situation.
So how do I handle things when I am out in public?
As normally as I can. Most of the local places I go see me with the earbuds in and I think most of them think that they are hearing aids. No one has ever said anything about the earbuds. My over-the-ear noise cancelling headphones are another story though. The looks I got when I wore those out in public were different depending on the situation. If we were just out running errands nobody said a thing. I was just some chick getting shit done while listening to music. But when my husband/family and I were out to dinner and I had to throw them on it was a different story. Nobody ever says anything directly to me, but they sure as hell say things loud enough for me to hear them. That’s when I went online and found the image of the card below. I haven’t printed these out yet, but I’m seriously thinking that I might. I’m torn on the issue, as I don’t want my burden to become somebody else’s.
Now here’s my reason for being hesitant to print these out. I should be prepared when I’m in public. I should make sure that I have my coping items and that should be that. On the rare chance that I forget them or the batteries die, I need to have a backup plan in place and with me. I’m not a student, I’m not out in the work environment where I have to have my ears open. If I was in that situation it would be different. A situation where I couldn’t wear the headphones/earbuds.
How would you react if someone gave you one of these? Would you care? Be offended?