#talkingback

A kids and teens perspective on chronic life


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The Biggest Lesson That I Learned

By Michaela Sullivan

May is Ehlers Danlos Awareness Month.

As everyone with a chronic illness knows, one of the hardest things is that you never know what the next day will bring. It could be a great, low pain day or a terrible day where you can’t even leave your bed because the pain is so high. Commonly, it’s somewhere in the middle, but you never really know. That’s what makes normal commitments such as school and work so hard when you’re sick. 

As a teenager living with EDS, the thing my illness has affected most is my schooling. Each year my parents and guidance counselor come up with a back-up plan for tutoring just in case something goes wrong. So far, every year, something goes wrong! I haven’t had a full year of school since 7th grade. Now, in 11th grade, the most important year is really draining me mentally, emotionally, and physically. This year, I was in school full time for 7 whole days. Seven!  My EDS subluxations have been a huge problem and all of my ribs came popping out, followed by my hips dislocating, followed by my neck and back discs twisting, followed by my knees becoming unstable, followed by my POTS getting worse, followed by my thumb permanently dislocating. And now, to top it all of, both shoulders now will not stay perfectly in place. So yeah, it’s been a tough year physically. Which explains why I can't sit for 7 hours a day in a plastic chair. It sounds crazy to think that a persons body could be so unstable, but that is what EDS can do to a person. So let me explain more.

Everything about school that is no problem for normal people, kills me. For example, looking up and down for notes KILLS my neck because of my c1 instability. (A lot of people with EDS have problems with the C1 and C2 discs in their neck, that is why they wear neck braces off and on depending on how they are feeling.) Carrying my backpack is murder on my shoulders! Like I said, they keep subluxing. How about those wonderful lunch benches? Just GREAT for my sacrum! Bending my legs that long to sit feels great on my hips!! Shall I go on? ‘Cause I totally can. 

So I just told you my reasons for not being in school full time. And it’s not like I’m not getting an education, because I am. It’s really tough, but I’m used to it. I have tutors that come to the house for a few hours each week. They’re all wonderful, but it’s just not the same as being in class. I have to teach myself a lot, and I have to know EVERY answer because there aren’t any other students around to answer instead. I also miss out on those spontaneous class discussions that turn into great lessons, which really stinks. 

Despite having to deal with all of this, people still say really ignorant things to me. I’ve had people tell me that I don’t earn my A’s. That’s funny, because I’m being graded the same as you, and guess what? i have nobody to copy off of. I’ve had people say that I could probably go to school if I wanted to, that I’m just not motivated. Really? I would NEVER choose to not be in school. Being isolated AND in constant pain is downright depressing and I wouldn’t wish it on anybody in the world.  Why would someone say that? But they have. Another common one is “you’re soooooo lucky to be out of school”. Oh am I?! Wow. I didn’t know sitting in a hospital room or a dark bedroom in a 9/10 pain was lucky. I guess I’m also lucky that my friends all kind of forget me when I’m not in school. I’m lonely, in pain, and missing out on my teenage years and you have the nerve to call that LUCKY?! 

It's funny.... one of the biggest lessons I have learned is actually from NOT being in school, and that is not to judge others. Half the time you probably don't really understand the reality of their life anyways. So, whether you’re a warrior like me (hey, i’ve been through a lot-i deserve that title :) or one of my peers looking for insight, you should NEVER make comments about a situation that you have never been in, or couldn't begin to understand. Maybe this blog will help raise awareness of not only what it is like to live with EDS, but also about how much harder it can be when people don't understand but think they do.

Because one person’s heaven could be another one’s hell.