*Disclaimer: this ‘article’ is basically just a journal, so if you’re looking for advice, this isn’t for you. Just me processing my thoughts. I wasn’t sure if I should post this, but I know that other’s journals like these have helped me work through my thoughts, and if it aids you in processing yours as well, send me a note.*
“Funny how you can be surrounded by people and still feel so lonely.”
– Erin Hannon, the Office.
That’s how I’ve been feeling lately. Lonely.
I work every day, with my team each week. I am surrounded by my friends and coworkers, by the kids that I teach. Every night that I have off I eat dinner with my family. But oddly enough, I still feel alone.
Chronic Illness has a way of separating you from other people, let’s call it Separation Anxiety.Sep Argue all you want, and you may see it a different way, but in dealing with a Chronic Illness, I believe that your life will never be the same. After going through something like this, you just aren’t the same person. And it’s rather grim, it’s hard for people who haven’t experienced it to understand.
But I’ve noticed that lately, there are several ways that I just feel separated from people.
I hate when my med times line up with a time that I’m with my friends, I hate it. Most of my friends don’t have to take pills three times a day in order to stay upright. I hate it when I pass out around other people, there are probably five people I feel semi-comfortable during an episode with. Today is July 1, and for the past few nights all I have been hearing is fireworks, another reminder of something that I love but no longer have access to because of my health. The one thing that I hate the most? The wheelchair. I absolutely hate the wheelchair. I guess it’s just the fact that I am a sixteen year old girl with nothing visibly wrong with her that can’t even walk on her own. It feels humiliating.
I am probably the most independent person I know. Honestly, I love spending time alone. I wouldn’t call myself an introvert, (I’m an ambivert by the way), I like people and I love hanging out with my friends and family. But I love spending time alone. I love and value my independence over many things, one of the things I have always been proud of is my strength. But now, my physical strength is gone. I’m forced to rely on people, it’s not an option anymore. On numerous occasions my best friends have had to half carry me to a safe location because of my sound sensitivity.
(That might sound stupid, basically sudden, loud, and/or high-pitched noises trigger a migraine that involves partial paralysis, head pain, etc.)
I am surrounded by people who care about me in this stage of life more than ever before, and for some reason, I can’t shake this feeling of loneliness some days. Some days, no matter how many of my friends are around me, I just feel… alone.
But you see, part of this is my fault. One of my strengths is my independence but it is also one of my weaknesses. Past experiences have led me to begin to shut people out in the name of ‘independence’ when I am really just building up walls to protect myself. You see, the rough part about letting your guard down is that when you get hurt with those walls down, all you want to do is build them back up; stronger and higher than ever before so that no one can ever break them down and hurt you again.
But you just can’t live that way.
I have to stop putting up walls in the name of ‘independence’ and start building bridges to those around me I already know care for me. I have to be okay with being open and vulnerable and not let my natural defense mechanism of sarcasm confuse people who I care about.
Today I went through the Dysautonomia International website. If you have dysautonomia, and you haven’t checked them out, you totally should. On a whim, I went on redbubble (a site that basically puts fan art and stuff on t-shirts and merch) and searched ‘dysautonomia’. And suddenly, tons of stuff came up. Tons of it. I just got tears in my eyes, because it was just a reminder that there are people going through what I am going through. I am not alone. Not only am I surrounded by people who I love and who love me and have stuck with me through all this, but I also have friends who really get what I am going through because they have gone through it themselves.
Shoutout to Ellie, my favorite POTS buddy. Water bottles and salted rice cakes for life.
Captain Puerto Rico.
(Inside joke, just ignore that and move on.)
Anyways, I guess the point I’m trying to make, to you reading and to me writing, is that I am not alone. My life has changed drastically. I never thought that I would be printing out a Medical Accommodation Card to keep in my wallet for OI, or asking for a brand new wrist blood pressure machine for my birthday. Things are different, I am different. I’m getting over being afraid of that, getting over that separation anxiety from who I was and who I am now. I have been stretched beyond what I ever thought I could take. I have seen who really is there for me through thick and thin. I have felt lower than ever before and somehow gotten back up again. I am different from my normal friends. But the important thing is that I am not alone. Neither are you.
If you haven’t heard of Dear Evan Hansen, you’re going to now. Dear Evan Hansen is an amazing, groundbreaking musical. DEH is about a senior in high school, Evan Hansen, who suffers from severe social anxiety. I don’t want to give too much away, but in summary, a kid he barely knew from school committed suicide and he gets wrapped up in a lie that changes his life forever. Listen, I know a lot of people don’t like musicals, but this one is big. This one is important. If you can, please listen to the whole track and look up the plot and read along as you listen. But if you really aren’t into it, just listen to the song ‘You Will Be Found’. It puts the words I try to communicate to music, the fact that we are not alone, we are never alone. I really can’t do anything more than to encourage you to listen to it, and give you some of the lyrics from the chorus.
Even when the dark comes crashing through,
when you need someone to carry you,
when you’re broken on the ground,
you will be found.
So let the sun come streaming in,
’cause you’ll reach up and you’ll rise again.
If you only look around,
you will be found.
So although feeling lonely in a room full of people sounds unreal, it is. As I always do on this blog, I recognize and we all need to recognize that loneliness is a problem and something we all feel and all need to deal with. If this is something you are struggling with and can’t seem to get past, that feeling could be a symptom of depression and/or anxiety. I’m not a doctor, I’m not licensed by any means, but please, talk to someone and reach out to someone. That’s the first step. It’s okay to be different, whether those differences are forced upon you by chronic illness or it’s just who you are. But that separation between you and other people is okay. It’s okay to be different, it’s okay to feel lonely, but know that you never are.