Monday, September 19, 2016

I've Got This Feeling...

My life is complicated. At 12, my medication list is at times longer than those of senior citizens. I have more specialists than there are teachers at my school, or at least close to it. I have seen a doctor or health professional at minimum once a week for the last few years. I spend more time in a waiting room or doctor's office than I do anywhere else. My health prevents me from going to school for extended lengths of time, which does nothing to help build my friendships. This is my life, for better or worse. I am the one who has to live with having severe Crohn's Disease, Ehlers-Danlos Syndrome, Psoriasis, and other conditions. I'm the one who has to live with an ostomy after my colectomy, as well as a feeding tube. This is just the way my life is

I had a recent experience which has been on my mind a lot and really bothering me. I had an encounter with a few mental health professionals who had completed an assessment focusing on the way illness has "invaded" my life. Because let's face it, chronic illness is just like an invasion. During the initial assessment meeting, my eyes had started to tear up from the dust or lighting in the room, or else from trying to hide a yawn. One of the mental health professionals was quite quick to point out in front of the group that I started crying when we started talking about a certain subject (I can't remember what it was). He went on to place all of these feeling words on me, and to make sweeping statements that in no way applied to what I was feeling. But I'm one of those kids who won't disagree with adults, at least right away without thinking about things first, so I didn't jump up and say "whoa" even though afterwards I certainly did. 

On our recent follow-up with them to receive the results of their assessment, it left me wondering who the heck they were talking about, because it certainly wasn't me. Another mental health professional said that I was likely internalizing my feelings because I didn't want to burden anyone with how I felt, and that when I started crying during the meeting it was a sign of deep, buried feelings. I think I'm pretty clear with my feelings and have expressed them plenty of times in very public ways such as being published on The Mighty about my experiences being bullied, and living with an ostomy. 

I'm also "too accepting". It is thought that I jump to accepting my health problems too quickly and don't allow myself time to feel the negative. That acceptance is the way that I use to escape from everything that life has thrown at me.  And I jump too quickly to acceptance because I feel "why bother" talking about the negative. Which goes hand-in-hand with me being "too positive", which I also use as an escape route. 

This has been really upsetting for me. I've worked hard to accept that my "old self" is just that, my old self. My life has changed dramatically but it's still a good life. My mom has always said since I was born that I have a choice when it comes to bad things; I can either let it eat away at me and be miserable, or I can find a way to work around it, to adjust. 

Being chronically sick takes a lot of energy out of me. Just to get through a school day right now requires every bit of my super-human strength. Feelings require energy too though, and if I spend all of my energy on focusing on the negative, that's less energy I have for everything else. Don't get me wrong, I still cry, I still get really frustrated and go off on 30 minute rants. But then I move on. I have to. If I don't keep moving on, what good is that going to do? If I chose to stay miserable, to stay in that place of anger and sadness, wouldn't this have more of a negative effect? So I chose to go to my happy place. My happy place is helping others. The feeling I get when someone says "Thanks Jacob, you're a great friend", helps me. It gives me strength to keep going. It inspires and motivates me. It makes me feel like I can accomplish anything. 

What I am having a tough time accepting are the assumptions made about me without really getting to know who I am. Things like "Well a lot of kids your age Jacob feel that....", or "a lot of kids that we see like you feel....", are not predictive of how I'm feeling. I was more than happy to discuss my feelings directly when they were chatting with me. But they also needed to be willing to hear the answers that I was giving them and not put words in my mouth, or tell me what I'm feeling based on the way "most other kids" are.  I am not "most other kids", I am ME. I am Jacob, and I have feelings that I'm not afraid to share. This confuses me. I can't talk about problems I don't have, and because a lot of other kids feel differently than I do, it's a problem? Since I don't have problems with being overly angry, or depressed at my situation, that's also a problem? But then on the flip side, if I only spoke of the negative, wouldn't that also be a sign of problems? And if I deny that I feel this way, than I'm just stuck in denial. And here I thought that the goal of the game was acceptance and adjusting to your new life by using positive coping skills. 

I've decided to stay positive, that there's nothing "wrong" with being me. I like me. I think I'm doing an amazing awesome fantastically superb job coping so far. 

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