Invisible Scars, Part 1 #HAWMC Day 13


Day 13 prompt: Perfect Comeback: Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know they were out of line?

I received my diagnosis of Fibromyalgia and CFS at the age of 16. Pain and fatigue was something I was used to, because in 1998, people were just learning about Fibromyalgia, and I had been complaining about these symptoms for years before my diagnosis. The doctor just kept telling my parents that I was depressed, and recommended that I start seeing a child psychiatrist and therapist, which I did. Anti-depressants can help some of the symptoms of Fibromyalgia, so I continued to see and still see a psychiatrist for medication management. But at the time that I was seeing the therapist, she was completely confused as to why I was referred for therapy, since I exhibited no signs of depression. Once I moved on from the pediatrician (which you can see up to age 16, where I live), my new doctor started sending me out to see specialists, and that is when I received my diagnosis.

At first, my diagnosis didn’t really affect my school experience. Growing up, I always got A’s on my report card. In middle school I was placed in advanced math (whoever made that decision was crazy) and I had really good relationships with my teachers, peers, administration, and coaches (I had been active in sports from 2nd to eighth grade {basketball and softball}.). I was a normal kid. I went on every field trip offered and any specialty trips like skiing. I was also active in all music activities offered at our school, including chorus, select chorus, all-star sing (invitational), concert choir, show choir, musicals, and county chorus (all of these required an audition). I was also active in a lot of community activities {ENERGY}, voice lessons, dance lessons, piano lessons, as well as very active in my church  and other churches (choir, youth group, bible school, Awanas, etc.}). When I transitioned to high school, I took all honors classes. Again, I got along well with my teacher and peers, and my GPA was never lower than 3.7. I was a member of the Honor Society, along with a lot of other clubs. I was ranked 13th in my class.

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I really enjoyed school. I had a lot of friends. I was outgoing and easily fit in with all of the different groupings: music/band kids, honor students, cheerleaders, and athletes. I also had friends from community groups and church. But there was this one group of friends that I had grown up with and considered us to be a very close group. My family had invested a lot of time in (from ages 5-17 and at least one since birth) taking us places on the weekends and hosting parties/sleepovers at our house. We were always together. Some of us went to the same church, lived in the same neighborhood and went to the same babysitter as toddlers.

Junior year, I was diagnosed with degenerative disc disease. I had a severe herniation of a disc in my Lumbar spine. I couldn’t walk, sit, or really move without severe pain piercing throughout my body. The surgeon really didn’t want me to start the continuum of back surgery at the age of 17, so instead I got injections. The pain caused my sleep pattern to get even worse and so did my overall pain level, and “fibro fog.” Fibromyalgia patients already do not typically enter REM sleep, so the pain made sleeping or concentration even harder. Anyone with a widespread myofascial pain disorder knows that mornings are the worst, because your body is so stiff, now add on fatigue from inadequate sleep and herniated discs. This is when school became a horrible experience for me.

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My doctors wrote numerous notes explaining my situation, but they were not received as legitimate excuses for my absences or coming into school around 11am, which meant I missed my first two classes (we had block scheduling–80 minute classes). I’m still at a loss as to why being sick caused the following. I guess it was because I didn’t look sick. But why weren’t the doctors’ notes sufficient?

The teachers’ went out of their way to belittle or embarrass me, either in front of the class or while passing me in the hallway. One teacher even talked about me in one of my niece’s classes. When I would arrive two and a half hours late for school, pottery was always my first class of the day. I loved pottery, but not the commentary during the class. When I walked in the room, the teacher would say, “Shaak, you decided to grace us with your presence today, or at least for half of the day.” Of course the kids would laugh. When you are sick and it is hard to get up for school, because of pain, it becomes even harder to push yourself to go, when you are now dealing with anxiety from being bullied by teachers and your peers.

Outside of the teachers’ critique and judgment of me, came the same from my peers. I became a topic of gossip. I was pushed into lockers, books knocked out of my hands. I was kicked out of the honor society and had solos taken from me in show choir. But the worst part was that all of the horrible things being spun around about me were started by the people who were a part of my “close” group of “friends.” They went out of their way to make life at school hard for me. They reported me for cheating in honors English, which I did not do…. They were just mean. No one talked to me. Regardless, when one of them got Mono, I went around and got her school work for her. She wouldn’t open the door, so I left it on the door step. No one else did that for her. After that school year, the majority of that group broke a part.

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I couldn’t finish out the school year, but the school would not provide me with a tutor. The school psychologist came and had a meeting with the administration, and told them that everything that my doctors and I were reporting was real and should be taken seriously. They didn’t. Their rebuttal was that the guidance counselor saw me sitting in the car parking lot at the grocery store, so I couldn’t be sick (I was waiting for my friend to pick something up (I couldn’t walk around in the store due to pain, so I sat in the car.). My pre-calculus teacher, who was a very nice man, said that a previous student teacher of his was living near me. He said he would contact her and see if she would be willing to be my “tutor.” He would gather my work up from all of my teachers and would make sure that the “tutor” got it; my parents would just have to pay her. Also, she would only be able to tutor me in math, and would just administer the work from the other subjects, so not really a tutor; it was better than nothing.

So, that’s what I did. But the photo copies sent home by one specific teacher were never legible. My tutor couldn’t read them and either could I. She reported the problem, but it didn’t change. I was also being given work from that teacher that the rest of the class wasn’t receiving, for example: the tests were multiple choice, but if you weren’t in class the day they were given, you had to take an essay test. She gave me all essay tests, for anatomy. None of my other teachers were evil. They weren’t trying to fail me. Yes, they spoke to me inappropriately and discussed me with other students and teachers, but they all treated me fair in the course work. My pottery teacher even spent the summer keeping my projects wet so that I could finish them, when I returned senior year. He was a good man, just a heckler.

In anatomy, we had to dissect a pig. My mom ran a daycare, and one of the mothers of a child my mother watched was a nurse. She stayed late one night, to help me dissect it. It was done perfectly. I was so proud of it. Did I mention that I started the year with an A in this class and this teacher was my favorite teacher in the high school? The teacher failed me. When I got the final exam for the anatomy class and saw that it was an essay test, instead of the multiple choice exam listed in the syllabus, I just sat in the school office and cried. I knew then that I would fail the class. But this teacher opened her mouth again to the students in her class about me. This time, I spoke up. We now had a new principal. He went down to her class room and told her to keep my name out of my mouth and that she better pass me. I got a D-. I graduated 43rd in my class instead of 13th.

Senior year, I kept my head down. A few of the kids called and apologized over the summer. I’m pretty sure it was because they no longer had anyone to hang out with; I accepted their apologies. I took half honor’s classes and half college prep classes. I hung out with the music kids, and overall the year was okay. Then the Senior Edition of the newspaper came out. This was a tradition at my school. Seniors could leave Senior Wills and then they had a Crystal Ball section where they prophesized the future for each senior. I didn’t write a Senior Will, but I found my name in quite a lot of them, some were people in my current group of friends (which broke my heart); everything written was hateful. I’d give examples, but that newspaper is at the bottom of my keepsake chest and I can’t get to it. I do remember my Crystal Ball Prophesy: “Lauren will be fired from her job, for using all her sick days in the first week.” 

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The editors, writers, and the teacher advisor all got reprimanded for the content of the newspaper. I don’t know what the teacher’s consequence was, but during graduation when she was upset, I found myself consoling her. I should have been saying, “See, I told you I didn’t cheat. Your precious honor’s students had it out for me.” Regardless, if it had only been me, no one would have gotten in trouble; I didn’t speak up. But parents’ of at least one other girl spoke up. The paper had written something horrible about a girl who was wheel chair bound, couldn’t speak, eat, or do anything for herself, without her aide. She was supposed to graduate a year ahead of me, but she wrapped her car around a pole. The school required she return the next year in order to receive a diploma. The punishment for the kids who wrote the paper was really not a consequence at all; they couldn’t receive their diploma until they wrote each effected person an apology. Every apology I received contained two sentences only: “I apologize for what I wrote. No one should be made fun of for being sick.”

I wish they would have received real consequences. At least one consequence that would have made them feel the way they made us feel. Something that would have stuck with them forever and really would have changed the way they treated people; one that taught them a lesson. What I lived through, the last year and a half of high school completely changed me and the way I approach life. I’m not capable of describing, in detail, the emotional pain that I felt during those two years and efficiently explain how it changed me; I’m not that good of a writer. But I can tell you that it was the beginning of who I am today. It was the beginning of me not trusting people; questioning their motives or sincerity. I stopped investing in friendships, or trying to make new friends. I became cynical and my self-esteem dropped. It was the first time I contemplated ending my own life. I became terrified that the same experiences would happen again in college and then in my career.

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Today, anxiety consumes me. After high school, my college professors gave me a hard time. After college, every employer wrote me up for too many sick days. I was judged not on my quality of work, whether I was at school or at work, but by my attendance record. PTSD and chronic illness is real. I have it in relation to certain doctors, procedures, and a certain ER. But my experiences from high school, college and work, have also left me with PTSD. It’s with me always. The second I cross the line into that school district, my stomach twists into knots. I’m just driving through to get to another destination, but just being there… the chance that I might see someone. I don’t go grocery shopping, to the pharmacy, to Wal-Mart or anywhere in the area (unless I am asked to, because giving the aforementioned explanation makes me look crazy), because the thought of running into someone is terrifying.

I babysit my cousin’s kids. They go to that same school district. Now my bullies’ are their teachers, their teacher’s kids their friends, and the teachers that bullied me are chairs of departments and considered mentors. Picking them up from school, taking them to after school activities… it is nerve-wracking. Now, I’ve been invited to their concerts. I want to go, I love them. I want them to know I support them, but I’m paralyzed with fear.

People say they were just kids; kids are mean. They grow up. And it’s true, they don’t think of me at all. They don’t remember or think about what they did to me. I, however, think about it almost every day. I cry about it still. It still affects me internally and holds me back from participating in things I would enjoy. They (teachers, peers, “friends,” family, professors, employers, colleagues) took that power from me and I let them. Why am I still suffering from the pain of the past? Why did I give them my power? Where were my parents; why didn’t they fight for me?

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In Part 2, I will discuss what I would have done differently to take back the control and stand up for myself. Hind sight is 20/20. Hopefully, this can help anyone facing a similar situation.

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