Yes, I am still sick. Please stop asking me.
Updated: Jul 5, 2020
If I had a dollar for every time someone asked me “you’re not better yet?” I would be able to afford a nice tropical vacation by now. I don’t know what is so perplexing about me still being sick, but it’s something that people have a hard time wrapping their heads around. Being asked this one simple question always leads to an awkward conversation that no sick person ever feels good after having. And let me tell you, it’s not like I only have this conversation once per person. The majority of the time, I will have this conversation 5 different times before someone will wrap their mind around the fact that I will always be sick. Let me break down why this question is so problematic.
First, asking me “you’re still sick?” says that you literally couldn’t take 5 minutes out of your day to google my disease. How many times a day did you look things up on your phone since the last time I told you I have Mitochondrial Disease (yes, we have basically had this exact conversation before) and never thought that you should spend 5 minutes googling the disease that I am sick with? Am I not worth 5 minutes of your day? In all honesty, I think that having this conversation more than once is insensitive and kind of insulting. This whole conversation could have been avoided by a quick google search, but here we are, having this awkward conversation instead.
Then, I have to tell you that yes, I am still sick. I politely explain that my disease is progressive and that I will get worse over time. Bonus points for insensitivity go to the people who say “you’re not going to die from it though, right?” because that answer sucks even more. I don’t know why some people think that it is socially acceptable to ask someone if they are dying, but please know, it is not. It is really messed up. And to think, this whole conversation could have been avoided by a quick google search.
Now, I am stuck having to comfort you. I tell you it’s ok that I have this crappy disease even though it’s not really ok. I tell you that Mitochondrial Disease won’t keep me down, even though it does on a daily basis. I somehow get stuck in an uncomfortable hug and you tell me that I’m an inspiration, which I hate to hear because in all honesty, I’m not an inspiration. My only choices are to fight or die, so I’m obviously going to choose life. Somehow after this whole encounter, you end up feeling better, but I feel even crappier about the whole situation.
Lastly, I get some unsolicited medical advice from someone who literally knows absolutely nothing about the disease I am sick with. Or better yet, a story about how you know someone who beat some disease (that has a cure) that isn’t even similar to Mitochondrial Disease. Then you follow up by telling me that because your friend beat that random disease, that I will beat Mito in no time at all. Did you not pay attention during this whole encounter? Mitochondrial Disease has no cure!!! My team of doctors know the nature of Mito and what the best treatment options for me are. Your unsought advice doesn’t help me at all. We finally part ways and I hope that we never have this conversation again, but I know that we most likely will.
So next time you go to ask your chronically ill friend if they are better yet, please don’t. Take 5 minutes and google their disease instead. Trust me, it's greatly appreciated.