Guest Blog: Going Through High School with a Chronic Illness
Written by Julie Mutschler
I have realized that the world is not bad, only some people are and living in this world is so worth it because there are people who care. I hope I can evoke that feeling in some of you when reading this blog.
My name is Julie and I was 16 when I was diagnosed, still in high school; in 11th grade to be precise. I suffered from a dog bite trauma, got diagnosed with scoliosis, asthma, and Endometriosis. I felt dead inside. I wandered around in survival mode and remembering bits and pieces of it makes me want to cry. I couldn't go on in my life because of how depressed I was. No one in this entire world (except maybe serial killers) should have to feel that way and the fact that some of you now might be feeling this way is breaking my heart.
I was an outsider, got teased and bullied a lot because I was depressed and posted my thoughts on social media in a cry for help, but these people didn't know what to do. I didn't have any friends because I felt so isolated and I thought that everyone wanted something bad to happen to me even when the bullying stopped and people were actually trying to reach out. My problem was that the same people told me "they hated me a few years ago".
I was putting so much pressure on myself because the only thing relevant for me at that time was my good grades and when even that began to be unimportant, I was devastated. I was near the end, I remember that clearly. I remember my average going from a 1.7 to a 2.6, not being the best in class anymore, not having the control over anything because my body just gave up. A teacher asked me what was happening and that I have to get better grades and I just started crying. I said I wasn't interested in anything anymore, didn't want to go to school, cried myself to sleep on most of the days. I don't like to think back to those times because I didn't realize how close to the end my body actually was until I was being treated later on. My serotonin was so low that my nerves couldn't communicate with my muscles properly and I experienced pain everywhere in my body and I mean everywhere. I had an emotional breakdown each time I came home after seven or six hours of school because I just couldn't get through the day. I couldn’t go out or meet up with anyone. Everything I did pained me so much and it was only the simplest of tasks, carrying a bag, walking up the stairs.
Each day that I had to go to school, I got angry at my mom for letting me. But she didn't know what was happening and neither did I until I slowly became aware of where the pain was located in my body. It was situated in my joints. When I described the pain to my mom, I remember saying it was "in my knees, sharp like a knife" and she brought me to her doctor. She suffers from an autoimmune disease called Lupus and she always had a sharp pain in her knee joints when she was my age. When she brought me to her doctor, I got diagnosed within a few days. All I did was describe my odd symptoms to her. That is all I did. It was just the tiniest things that I had realized that were enough to diagnose an invisible illness. Only you can know. I still can't imagine it being over in the next year. All that suffering could come to an end by just taking a visit to a really good rheumatologist. I experience most of the symptoms: joint pain, brain fog, no energy, exhaustion, fatigue, de- pression, the butterfly rash, concentration problems and so, so much more. I had it on paper a few weeks later: Diagnosis: Autoimmune disease, undifferentiated collagenosis which tended to be positive towards Lupus. There it was. I can say that she literally saved my life and I am so thankful for her until this very day. It makes me emotional thinking about how good some people could be, even though I thought some to be made of pure evil at that time.
What followed would be a very difficult journey and that is what I want to help with, the reason I am writing this blog. I don't want others to go through this, but I know that some of it will be inevitable. The anger and tears that we have all shed over any kind of temporary or permanent pain is what connects us all. If there is one thing I do know, it is that there are several possibilities to handle that pain or the isolation that we experience. Nobody gave me instruction to this so I had to find all this out by myself but it was and still is extremely hard and I thought I could just make it easier for a few people, especially teenagers out there.
What followed after my diagnosis was, first of all, telling my class. As emotional as I am, I, of course, started crying when I talked about what I had been diagnosed with. One girl, so I was told, started crying because she was actually a "former bully" of mine and had only now discovered what I have been going through and I was happy. I was happy that this diagnosis was a slap into the face of all those people who didn't see what was going on with me. It was a huge relief for me because for the first time I knew, I wasn't crazy and everyone around me was wrong. I did suffer! There was something wrong with my body, my mind and just about everything else! My mom described the same feeling when she was diagnosed. You may ask, how my family only realized, that I was going through something so serious later on and they did, but as any parent, I think something that serious wouldn’t be the first thing that comes to mind. Plus, I couldn’t articulate the pain I was feeling and it took me a long time to find the words for that dimension of hurting.
In the next few months, it was incredibly hard. Almost harder than my dark years before that because now I was actually conscious of what was happening and it was awful. My body was so close to giving up that I needed intense treatment. I was visiting the hospital quite frequently for the next couple of months, going to about five or six different doctors, each with other medication they wanted to shove in me. Nothing worked at first and I was getting more tired with each day that passed. I remember this one doctor telling me I didn’t have “real depression”, just the symptoms of an autoimmune disease and I could not believe that someone had just told me that all the days and nights I had spent crying with no outlook of hope were not sufficient enough for the diagnosis of depression. I saw no light at the end of the tunnel. The pain would be eternal.
I sat in class, crying and shouting at just about everyone because I was so frustrated, trying to explain this unbearable pain to them that they still couldn't understand and I couldn't describe because it was the definition of hell. I had multiple conversations with classmates, friends, and teachers who all couldn't help because they didn't know how to. I didn't know how to help myself either, I just got diagnosed recently. How was I supposed to know what to do or what not to do. My mom did some research and she found something called a "compensation for disadvantages" or "loss compensation", the greatest thing that existed in this universe for me at that time. Apparently, you could request one where you had different possibilities to compensate for the disadvantages you have because of your disease. I could, for example, write an exam longer than others because of my concentration problems or take a break during one. My school didn't do much to say the least. It got to a point where I angrily texted a teacher to give me my damn loss compensation and that I was diagnosed three damn months ago, something should have happened by now since the school knew that! All my doctor's certificates got declined or a teacher had “accidentally” lost them. Some teachers were incredibly disrespectful and had a pure lack of empathy. It's just the harsh truth that people without any of these conditions cannot understand. Some people just simply are not as empathetic as other human beings. All of us have felt angry at someone who couldn’t understand what we were experiencing. I am still getting texts from people saying that I am being disrespectful towards some teachers until I actually explain to them what they did: nothing. My compensation didn’t get through until a few months later and if you are reading this, just scream at them once! Then something will actually happen. That was my experience. (Of course, please don’t do that. That was meant sarcastically. Just go to the head of the office/school, get or make some contacts, ask around in the highest ranks and you are guaranteed that you will get attention. Or write the compensation yourself, that’s what my mom did. Now you only have to get a signature). Once, when I was bleeding internally, a teacher told me to "suck it up" because "everyone has stomach aches once in a while". Some people just don’t understand. Some teachers wanted me to write three exams in a week. I could barely make it through five hours in school. I couldn't walk the stairs! How the heck was I supposed to learn that much in one week? I was still on medication trials with emotional breakdowns happening every single day in my life! I am not exaggerating! It was horrible. I was in such a dark space. After I had multiple nervous breakdowns and was shaking in my whole body, then something actually happened and the principal explained my needs to his superiors who had to sign this thing to make it official.
Then something even more incredible happened in the meantime. The doctor who diagnosed me told me, that she knew this psychiatrist, who was a very good one and referred me to him. I walked into his office and he called me a pretty girl, explained to me what was wrong in my brain, my serotonin level was too low and so my nerves were sending false signals to my brain to cause pain that wasn't there and that this was due to the autoimmune illness and he would fix me. I walked out of his office and in a long time, I had a genuinely happy smile not only on my lips but in my heart. My eyes were sparkling with pure happiness. As soon as I started this medication, I began to feel so much better for years. Oh, I can't tell you how often I thanked God, or whoever gave me this solution. I am still so thankful, I can't describe it. I still had to find the right dose, but everything was okay until one night I experienced another kind of pain I hadn’t had before, and trust me, I experienced all kinds of bodily pain but this one was different. It went on for a few days and it got to the point where I could not sleep because it was everywhere so I went to see my first doctor again. She started pressing a few points on my body and each time she pressed one of them it hurt really bad and I asked her "how do you know where my pain is located?" I thought she had some kind of abnormal medical superpowers. She said "All of these points that I just pressed hurt when I touch them?" I said "yes!" as if I thought it wasn't obvious before. "I thought these were the Lupus symptoms", I said and she just shook her head and said "no, this is fibromyalgia. You are qualified for this diagnosis. You have fibromyalgia" I was like "I have what?" Never had I ever heard of that be- fore and I still couldn't pronounce the name a few months later. Still not many know that I have this diagnosis. I wasn't focusing on the good and it took a therapist for me to realize that. I just couldn't deal with this on my own and it just got too much, mentally. I didn't want to go to a therapist at first because there was still a certain stigma around that subject. Here is something important I learned: A therapist cannot read you and your deepest darkest secrets, so you do not have to be scared and he actually wants to understand you because at least mine is a decent human being who wants to help people. All I had to do was talk about it.
I also realized how amazing some teachers and classmates really were! One teacher met up with me on a weekend to write a math exam I had missed so he could give me as much extra time as I needed! Some teachers did want to help, and they did! I can't express my sincerest gratitude to them because that feeling I cannot put into words. It is a cry of joy. There were few if not many people who wanted to help me but just didn't know how to and they did it in their own way. Some became distant because they wanted to give me space to figure things out. The thing is, when you have depression, you see the world differently. Your whole perspective on the world and everything that is happening around you changes and things that seem innocent, I viewed as harmful. One example from real life to explain this: On the conference, I decided that I was going to make a calendar with the colors red, green and yellow to signal my pain level to the teacher, red meaning it is unbearable and I have to go home or to first aid, yellow meaning it's shifting towards red slowly and green meaning I am still in pain but I can bear it and concentrate on other things. This is an idea a teacher had which was brilliant! It helped me a lot. I also brought a blanket and a pillow for this hard ass chair I had to sit on every day to school and I always have one small bag with all of my things I need in case of an emergency: my medication, my bandages, my counter pain lotion and my pillbox. Now as I had this calendar, somebody had put it on green even though it was supposed to signal red. I was furious that I had a breakdown once again in front of everyone and then the person came forward and said that she had put it on green because she wanted me to come back to something happy and maybe that it would distract me from my situation a bit. While her actions were debatable, I realized that she didn’t want something bad to happen and I apologized. I explained how my perspective changes with depression and my teacher agreed with me as he was once doing something with psychology at an internship back in his early years. He is actually the reason I want to study psychology because he somehow managed to spark my interest in this subject I hadn’t considered for a while up until a few weeks before that.
I also had some friends leave, but I have some really loyal ones that didn’t abandon me when I was ugly crying every day and that really touched my heart, even if just through text because they were in Germany or not in school that day but they were still there. One guy remained by my side through all this ugly and never got to see me improving and doing as well as I am now and this breaks my heart in so many pieces because of all my friends, he deserved to see me happy the most. I cried my eyes out every other day in his arms and he always managed to calm me down. He is an incredible human being and we still remain in contact to this day. I text him my milestones and he writes me that he is proud of me. This makes this all worth it. The reason I couldn't consider leaving this earth was not only him but my family. They have been through all of this every single morning until late at night, driven me to the hospital, spent all this money on my medical treatments and of course, I could not help but feel like a burden but I now realize that they do not see me as such because their love exceeds this.
I went on to write every single friend of mine several thank you notes and also thanked all my doctors. I told them that they had saved my life and they did. I spent all these years in survival mode, basically not communicating with the world around me until I actually got to experience life as it is meant to be experienced, with joy and passion.
I am graduating at the moment and it is a huge personal success for me because this was the goal I was striving towards for so long. I have already completed my written finals so I am more than halfway through! It was very challenging physically, to be on full concentration for four-five hours, but I took a few breaks, which were permitted since I wasn't allowed to write longer there. Without the breaks, it would have been even harder to push through and I am thankful that the school lent me this opportunity. I wouldn't be where I am now if I hadn't had help. However, I am not in debt to the school, as they owed me this one.
I am now 17 years old and confidently about to graduate from school and go to college in the same year as I have the strong will to learn so much more. There is so much out there. I want to travel the world.
What is my advice to teenagers with a chronic illness?
When you are feeling like everyone is bad to you, remember all the good things people have done for you. People care about you. You have many close friends and there is so much love between you, your friends and your family. Simply remember the feeling. Remember what it feels like to be loved. There is always one person who loves you no matter who you are! And if you don’t have a good support system, there are always apps like ReachOut that have helped me a lot, support groups around the corner or online, people who are going through the same and if that isn’t enough, I love you and I believe in you. I might not know you, but I do.
When you feel anxious, remember to not only calm down and live in the present, but that you are successful for being where you are right now at this moment. You have come so far! Look at the journey behind you!
When you are feeling depressed, remember that it will get better. Remember that there is always light at the end of the tunnel. It might not be a sun, but simply a light is enough.
When you are feeling hopeless and frustrated, remember that the pain might never end, but the intensity certainly will. I was on survival mode for five years and now I got to live! There are so many good and enjoyable things out there. It will get better. Trust me.
Also a few tips for school:
-Make it more comfortable and bearable there. Bring some blankets, pillows, leg warmers, anything that will do a little good. It helps immensely.
-Request compensation for your disability! Fibromyalgia and Lupus are both invisible chronic illnesses that inhibit you to do tasks in the range and intensity as a healthy human being is able to do them. You have the right! Don't let them take that away from you.
-If you have the money, go see a therapist. I was lucky to find one who doesn't ask for a huge absurd amount of money for one hour. I have had 23 sessions so far and it was a good decision to start therapy with him.
-Don't overexert yourself. Something my mom always says to me is "just think about today, and if that is too much just think about the next hour and when even that is too much just about the next minute". Take it slowly.
-Even if you just suffer from depression or anxiety, alcohol and drugs won't help it, it'll just make it worse.
-It's better to stay at home, watch some Netflix on a day where you have a flare up and distract yourself from your thoughts a while when you are depressed. Be comfortable in your warm bed and take some time off. Now, of course, this is limited in school, but I suggest staying in contact with one of your doctors in case you need an excuse not to go to school for the teachers to understand or simply in case something happens. Your doctor can give you instructions in the WhatsApp.
Everything will get better one day. Just hang in there a little longer. I believe in you and all of us warriors do. We believe in each other. This is what makes this community so strong.
I hope I could help in some tiny way with the experiences I made. It’s okay to be angry, to cry or to be frustrated and hopeless. Let it all out. “You can scream, you can cry but you cannot give up”. Life has much to offer and when you learn to appreciate the small things, it makes it all worthwhile.
I’m glad I got the chance to write this and get my experience out there. I wouldn’t be here without my friends, family, my mom, my dad who is the foundation of our wellbeing, my sis- ter, all my other relatives who have helped me or prayed for me, teachers and the support they all gave me. I also want to thank the creator of this blog and @fibro_warriors on Instagram, Krissy, for giving me the opportunity to share this for people to see, to actually get my thoughts out there. I think it’s important to know that we are not in this alone. Nobody is.