They Don’t See…And It’s Hard.

They Don’t See…and It’s Hard.

It’s hard to be confident with a chronic illness. It’s hard to accept confrontation with those around you and be your own advocate. It’s hard telling your doctors exactly what’s going on, fighting for further tests, more medications, or even less medications really, when you’re not comfortable with a conclusion they’ve drawn that you know deep down isn’t right. It’s telling your mom, when you’re only 15, that something is wrong, even when you feel that she will just pass it off as you exaggerating. It’s being 16 years old, and knowing that the Celiac’s Disease diagnosis you were given 6 months ago isn’t correct, because you’re still in pain, you’re still exhibiting every exact symptom that you had before going completely gluten free. You feel bad for the extra burden on your parents when you draw this conclusion because that means even more tests, co-pays, traveling to specialists, and time away from school. Getting bullied and talked about behind your back because you LOOK fine on the outside, because no one can see your internal pain or the number of bathroom trips you take. They don’t see the weight loss because you hide it behind bulky sweaters. They don’t see the 10 vials of blood being filled each time you go to the doctors. They don’t see the utter embarrassment of collecting a stool sample and taking it to the lab, carrying a specimen bag that you just know that any other patient waiting in the lab already knows what it is and is silently judging and making fun. They don’t see the hateful messages you receive at 17. They don’t hear the “cool guy” looking at you in your English class saying “oh my dad had a colonoscopy too, it’s not that bad, they don’t even put you to sleep for it” to which you don’t reply other than “Thank you for your advice and kind words”, and you think to yourself “well, my last two, I was put to sleep and had a camera shoved down my throat too, they can’t really keep you awake for that but okay then”. You don’t say that out loud though, for fear of any retaliation or more bullying from the popular crowd. They don’t hear the cool kids saying “isn’t that an old people’s disease? There’s no way that you have that….you can’t get it if you’re under 50”. “Well okay I didn’t realize that you were a 17 year old gastroenterologist, I’ll be sure to let my doctor know of your opinion” you think to yourself, but just say instead “Actually, anyone at any age can be diagnosed with Crohn’s Disease, but it tends to begin showing it’s symptoms at around age 15-20, if you’d like, I can send you some medical journals and articles on it.” They don’t hear the comments people say, calling you “lazy” when you sleep in, and just cannot get out of bed today.

They don’t see the hours you’ve spent crying yourself to sleep because of pain. They don’t see when you’re at home, only able to eat half of your meal before you’re bolting for the bathroom because if you don’t go right then and there, you’ll have an accident. They don’t see you on your knees, begging GOD to make you better, make the pain stop, ask God “Why Me”. They don’t see the internal battle you have daily with yourself when you’re in pain debating whether or not to end it all. They don’t hear you saying “ending it all would be worth it to not have this pain”. But of course, you can’t tell anyone that you’re having those thoughts, because then they’d just call you an “attention seeker” yet again, because “how bad can your life really be”. They don’t see you struggling with the fact that you’re going to be on narcotics, knowing you’ll run the risk of becoming an addict. They don’t hear the midnight calls and texts to your best friend because you’re just in so much pain, physically and emotionally. They don’t see YOU. The real you. They see the strong, quiet front you put up.

They don’t see the fear and anxiety you have on graduation day. They don’t hear you talking to your parents, friends, siblings, worrying about what will happen if you’re up on the stage and you have to go to the bathroom. What if the urge hits while marching. They don’t see the relief you feel once graduation is over, and you can finally run to find a restroom. They DO see the relief you feel once it’s summer vacation, because everyone can see and feel that, but what they don’t understand is, is that it’s relief for an entirely different reason. It’s time away from everyone, it’s time to just decompress and not have to worry about leaving in the middle of class for a bathroom break, or a doctors appointment and hearing “again???” From students and teachers alike.

You can argue that “teenagers will be teenagers”, but truthfully it’s no excuse. It’s not hard to show compassion. It’s not hard to be kind. It’s not hard to keep potentially hurtful comments to yourself. It’s not hard to be a decent person. 

They don’t see, and as awful as it feels right now, I promise there is someone who sees, someone who understands, someone who’s willing to talk to you, spend hours listening to you vent, cry, or just talk. Someone who will keep your secrets. Even if they aren’t there physically, there’s someone that’s there for you. There are very few people I went to school with who knew exactly what I was going through, and were there for me no matter what, and never once made an awful comment about what I was dealing with. Who would let me vent to them, and kept what I said confidential. They were my rocks, and I truthfully don’t think I would have made it out of my high school career alive without them.

So thank you, to MP, MP, and KK. Thank you for seeing me. Thank you for hearing me. Thank you for believing and understanding. Thank you for being my best friends. Thank you, for being you. I love you all more than you know. Whether we’ve drifted apart as we’ve grown older or not, I still owe so much to each of you. You’re all amazing people.

As I’ve stated in prior posts, my email is always open, for help, resources, to be a friend in a lonely world, to educate, what ever it may be. 

Feel free to contact me via email at crohnswarrior2016@gmail.com or on instagram @dodgingkara

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