prettyndsweet12 asks: I have this condition called Myoclonus and it causes me to make these embarrassing jerking movements. Lots of people have been asking me questions about it, and I don’t know what to say. If I tell them what I have, then they will think I’m weird. Lots of people laugh and joke about me, and it makes me sad. I know it may help if I tell them, but at the same time it may make things worse for me. Please help me.
Hi prettyndsweet12 –
Thank you so much for your letter. I had never heard of Myoclonus before, and I’m glad to learn about it – though very sorry you’re suffering from it. (For those readers who also don’t know about it, there’s a lot of good information at http://en.wikipedia.org/wiki/Myoclonus).
Of course I’m not a neurologist, so I can’t offer you any wisdom about the actual condition. But as a loving dog, I can certainly offer you some ideas about the difficult situation it’s putting you through.
Most people are nice, sensitive, and kind. Of course there are exceptions (there are lots of names for them: “Jerks” is one I use a lot, though “Ignoramuses” is perhaps more accurate), but I’m guessing that most of the people who are laughing probably don’t realize that they’re hurting you so much. In fact, they might even think you’re just clowning around, when you’re actually just making movements you have no control over!
Because of this, the people who are suggesting that you tell people about the Myoclonus are probably right in most cases, but the tough part is figuring out when and how. Do you introduce yourself, “Hi, my name is prettyndsweet12, and I have Myoclonus,” and then have to explain what it is? Or do you wait till you make an involuntary movement and then say “Oh I didn’t mean to do that, it’s a neurological disorder I have?” Or do you wait till they laugh or look concerned or ask?
The awful fact is that there is no perfect answer to this. It reminds me of a friend of mine who lost half her leg in childhood. She has a prosthetic limb, and can wear pants or tights and look like anyone else. But then, when she meets new people, she’s stuck with that same question – when to tell them? Especially when it comes to dating – do you talk about it too early or too late – it never feels just right.
I can, however, tell you one thing that is almost always true. You don’t need to worry that, if someone asks you about your condition, you telling them will make them think you’re “weird.” Again, there are jerks out there who might say such things, but everyone else will be the exact opposite. They’ll appreciate your honesty about it, they’ll want to put you at ease, and they’ll actually let you into their heart in a special way, realizing the tough time you’re having. A simple line like “It’s a neurological condition called Myoclonus” will probably be enough to ease the situation. If someone wants to know more, then you can either tell them about it or suggest they look it up, depending on what you’d like at that time.
But what needs to change is that those people you mention are out there joking about your pain. It’s really important that they learn the truth – that you’re not stupid or attention-grabbing or weird, or anything else. Your condition is no more “weird” than the hiccups every one of them has had, or coughing or sneezing. If you’re uncomfortable telling them about the Myoclonus, maybe you could get a friend or an adult to talk to them about it.
Or here’s my favorite thought – if this is happening at school – you could do a report about it. Imagine what it would do to those laughers if you got up in class and gave a presentation about it in detail. Any joke about it would be shown up for the idiocy it is – the joker would be seen by everyone as ignorant.
Which they are. But ignorance isn’t a crime. After all, until I got your letter, I was ignorant about Myoclonus too.
The crime is in being a jerk about Myoclonus once one knows about it. And your telling people about it is the one way to stop most of that from happening, and reveal those who still do it for what they are.
Thank you for your honesty and bravery. You’ve made me and all our readers into better mammals for the experience!