Wednesday, February 3, 2016

What's Worse, Having an Illness or Having An Invisible Illness

I never understood the term invisible illness, in fact I never really understood the term invisible. For as long as I can remember, I've only liked concrete things, or things you can visualize being in a physical form. I've had hydrocephalus my entire life. But I never admitted I had it, until I was 13. In fact, I still remember, when my older sister was in 8th grade, she was doing a family tree for science class and she had to put all the diseases/medical conditions that everyone had. She had asked me if she could put mine on there. I quickly said, "Um.. NO," and we sort of left it at that. Then when I did my tree two years later, I decided to put it on there. I don't know why, but I just did. Then when I was sharing my tree, my teacher commented that I had an illness under my name. But that I looked totally healthy, and I tried to explain my illness. Which looking back on it, I did a horrible job, because I didn't even really know the science behind the illness, or even why it created all the problems it created. But after that, my teacher said to me, "Wow, but you look so healthy, I can't believe you have what could turn into a fatal illness, it's amazing." At that point in my life, I took that as a compliment. But now, I don't know, I can see why he said what he said, but now I don't think I would take it as a compliment. There are so many negative connotations that come with having an invisible illness, I can't even seem to count them all.

The term invisible illness has always been sort of an anomaly for me. An anomaly that I could never understand. How could it be invisible if to me it was supremely real? But as I got older, and realized that when I get up and "put my face on" in the bathroom, and pick out what I'm going to wear for the day, that is no different than picking out a Halloween costume. What's the point of Halloween? Being something we're not. What was I doing? Being something I'm not. A healthy person. A perfectly healthy person. You may get used to the physical pain. But there's one thing that your body will NEVER get used to. And that is the sheer terror, the lump in your throat that you can't seem to swallow, no matter how hard you try. That looming black cloud that seems to follow you wherever you go, of IS THIS  GOING TO GET WORSE, and then what am I supposed to do about it. You're a veteran of just taking care of the status quo, but every time it gets worse, it feels like a totally new experience because no two health crises are exactly the same.

What's the worst part of all of this you ask? It's when  your parents and all your visitors leave your hospital room, and you're left to just soak in the seriousness of your situation. Where no one can help you anymore. You're just here. Listening to your IV drip drip drip. Watching your nurse, infuse benadryl into your IV and counting the tears that fall because of how much it burns, it feels like your veins are on fire and your hand is bright red to prove it. Just wishing that it would knock you out like oral benadryl does so you could not feel the terrible pain of it infusing. I've heard this before, countless times actually, "Aren't you used to it by now?" How can you become used to the ever present betrayal of the one thing that you can say and prove is YOURS? How can your own body that you took such good care of for 27,28,30 or 50 years, suddenly just decide without any input from anybody, to just break down into a thousand little pieces after all of your hard work? And most importantly, how can you, the owner of your own body, the keeper of the keys, the lion tamer, the captain of your own ship, say, "I can't control any of this." I have no control and can't do anything about this.....  It's hard, but we do it.

From one sick person to another I'll tell your a secret: It's OK! Hold on Little Fighter, Soon It Will Be Brighter!


  1. Omg.

    Hello! I don't want to sound like a random stalker (but the truth is I'm just commenting on the first post on your blog because Facebook is too public ..)

    Hold on - I'll introduce myself. Hello, I'm Dora. I am also a young adult with congenital hydrocephalus (which I also didn't understand as a child - cos my parents hid it from me. I just knew I was different, & sufficient self-sleuthing later, I gradually found out more about this over time. Hehe.) I found your blog through the post you made on The Mighty. I was browsing the main website - which I hardly do, because I usually read from the sub-pages on Facebook. But anyway, I was. & then I saw a new Hydro article and obviously got kind of super excited ... haha oops.

    Here's mine - ;-)

    I think I'm one of the blessed few who haven't required shunt replacements & the like hehe, the surgeries my article talks about are tendon release ones. But yes - the longing to be as athletic as my friends (just to run a 10 minute mile! Is that too much to ask for, oops) & stop being Such a Klutz is real. The last I remembered, I slipped on a tiled sidewalk cos I kicked onto a crack, dropping the guitar I was carrying (that wasn't even mine) & ripping a hole in my jeans. While accompanied by an acquaintance who doesn't even know about my hydro because #invisible. Woohoo, so much fun .

    But hey - we can be awesome too! x (Sometimes I think my Generalized Anxiety Disorder is a greater pest than Hydro. Haha. I mean at least ... Hydro doesn't make you afraid of .. taking phone calls, lol. snorts. Oops.)

    1. Hi Dora!
      Yeah I wish I was a rarity, but quite honestly, the only hydrocephalus people I know personally are WORSE than I am. I've become more "stable" if you can even call it that in the past few years. I've required 3 surgeries in 2014, but thankfully I haven't needed anything since. I do unfortunately have chronic pain because of the amount of surgeries I needed and the subsequent infections I had because of those surgeries, so now I see a chronic pain specialist, probably more than I see my neurosurgeon. Because he has told me that this is really the best they can do for me at this point, so I sort of just accepted that, and went to the chronic pain doctor. But yeah, I read your article and its' amazing. Stay Mighty! I hope to read more articles in the future!


      Haha. I decided to give this a whack since I could craft a response to it. Hahaha I think the formatting is kind of screwed up (by which I sorta mean it looks different from the way I paragraphed it when I sent it in), but content/other misc editing wise - there ya go ;-)