I never understood why I would get angry when I saw people's faces drop when I tell them about my life. I have realized it angers me because people don’t understand the complex feelings that stem from chronic illness. I have experienced more despair, hopelessness, pain, trauma and sadness in the last 8 years than most people ever will in a lifetime but I think I’ve also experienced more joy than most people I know. True joy really only comes after true pain. When people ask me if I would change what has happened to me I always say no because the experiences I’ve had, connections I’ve made and relationships I've built are irreplaceable and wouldn’t have happened without my chronic illnesses. I have had so many basic things taken from me like my ability to walk, my ability to eat, my ability to go to school and more which makes me so much more appreciative of these things in my life. I have always believed in the saying “Fake it till you make it” I’ve really clung to this the past 8 years. My story has been able to connect me with more people than I ever could have before. Most people take their health for granted until it’s taken away. I can’t judge people for taking things for granted because I did too, until one day in 2017 when it was ripped away from me in an instant. 

I walked into that room blissfully unaware that this appointment would completely change my life. I had been dealing with severe pain in my right foot for over a month and no one could figure it out. That specific doctor we were seeing was able to figure it out, but it was one of the most gut-wrenching sentences I’ve ever been told. My Mom and I walked into that room expecting to hear the same things we've been told over the last month: “We don’t know what's wrong, everything looks normal”. Neither of us were prepared for what he told us that day. 

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     We walk in to sit in the uncomfortable hospital chairs like we have done the last month. We both sit down and look at each other cautiously optimistic that they may be able to give us more information today in order to get me better. He walks in and already has a suspiciously sad look on his face. He sits down across from us, holding pretty steady eye contact and breathes out the air he had been holding in. He looks at both of us and says: “Ok so I am going to tell you that this is not the news you most likely want to hear”. At that moment I think to myself: “Do I need surgery? Is something really wrong? Why does he look so upset? ". So many thoughts are racing through my head at that moment. He then says: “I have been doing some research because your injury does not make sense medically. I came across this article on a patient in almost the same position as you who was diagnosed with a condition called: Complex Regional Pain Syndrome. This is an extremely rare, chronic pain condition that has been very rarely documented. Your symptoms fit this case almost exactly so I would be pretty confident this is what has been causing your pain.” My world completely stood still in that moment. Life didn’t feel real, it felt like I was in a scene of a movie. I couldn’t speak, move, or do anything for that matter. 

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     My mom was able to be calmer and ask: “Well what does this mean? Can you fix it?”. His face dropped more in that moment and he responded by saying: “This condition is so rare and not well researched that I had never even heard of it before. But I do know that currently there is no cure”. I could no longer hold back my emotions and broke into tears. My mind starts racing with all of the unknowns. Will I be ok? What does this mean for me? Will I be able to walk again? Can I ever dance again? Will I be in this much pain for the rest of my life? While these thoughts race through my mind my mom is talking to the Doctor but I can no longer hear. I have no idea what they said and at that moment it didn’t matter. Nothing else mattered at that moment because it felt like my whole world just ended. 

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    A week after that appointment I was started into intensive physical therapy with someone who specializes in CRPS. At that time physical therapy was the only treatment option available. I was now needing to go to physical therapy 2-3 times a week. I was in 8th grade at the time and would have to leave school early multiple times a week for this. This was the first time in my life that I felt that alone. There was no one around me who could understand what I was going through, and it felt like I was the only person in the world who had to suffer with this condition. I was in a horrible place mentally because this condition stripped me of everything I had known. I could no longer dance, I couldn’t go to school like normal, I felt like I couldn’t relate to anyone around me, my life didn’t feel real. 

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     Physical therapy was so hard mentally, I just wanted to give up because I knew there was no cure so why I should keep trying to get better. The physical therapy was also hard physically because this condition causes so much pain that it is nicknamed “the suicide disease”. I had to completely relearn how to walk which no 13-year-old ever expects to have to do. I lost so much independence because I couldn’t even get to the bathroom without crutches. I couldn’t wear socks, pants that touched my affected leg, could only wear crocs and was completely reliant on crutches for my mobility. I was moody all the time because I honestly didn’t feel like life was worth living anymore because I had lost so much from this condition. My physical therapist honestly saved me because she motivated me to not let this condition take any more from me than it already had. The next 7 months I went through intensive physical therapy but eventually it paid off. After 7 of the hardest months of my life, I was deemed to be in remission. 

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     I walked into physical therapy that day and for the first time in months I felt hope instead of dread. I knew how much I had been improving since I first started physical therapy, but I hadn’t realized how close I was getting to remission. In my mind I still had a couple more months of physical therapy. When I walked in, the look on my physical therapist's face is something I won’t ever forget. She had a beaming smile on her face. I was confused by how excited she looked and when I asked her why she was so happy she said the four words I waited to hear for months. She said: “You are in remission. This will be your last physical therapy session for CRPS. I waited to tell you because I didn’t want to get your hopes up but me and your Doctors have agreed your improvements mean you can stop physical therapy with me.” A huge grin spread across my face in that moment and when I looked at my Mom she had tears in her eyes. We had both waited so long to hear those words. When I first started physical therapy I hadn’t been able to walk in over a month and had to relearn how. Now I was back to doing everything I could before I got my initial injury. I could finally do everything I had missed out on for months, but I was no longer the same person. At just 13 years old my life was completely uprooted but it gave me things that could never be taken from me. When you lose everything, you better understand what is truly important in life. 

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     May 7th is the day my life flipped upside down and I had no idea what was going to follow that day. I couldn’t have imagined how different my life would be after I got that headache. I remember the moment I got that headache, the headache that would uproot my life. 

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     I was sitting in the car with my now ex-boyfriend when I got the worst headache I had ever had. I didn’t know then, but that headache would last almost 3 straight years with no relief. We were on the way to my boyfriend's lacrosse game, so I just sucked it up for him because I always loved to support him in everything, he did, just like he did for me. I went to bed that night expecting the headache to be gone by the time I woke up. I woke up the next day with the headache that would consume my life for the next 3 years. I never expected that would be my new normal but alas this was now my life. 

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     No one understands how much the human body can adapt to pain until you have no other choice but to live that way. Over the next 7 months my life would be filled with endless tests, scans, procedures, Doctors appointments, gaslighting, malnutrition and pain. Oftentimes Doctors often believe that any teenage girl with GI issues is suffering from either an eating disorder or just simply being dramatic. For me Doctors believed I was being dramatic and let me get so malnourished I will have permanent damage to my body for the rest of my life. By the time they decided to help my nutritional status I had lost 20% of my body weight and had muscle wasting. No one understands how truly terrifying malnutrition is unless you’ve experienced it. After months of Doctors believing I was just dramatic I finally was given an answer; I was diagnosed with severe Gastroparesis. Gastroparesis is a rare GI condition where the stomach muscle does not work properly which inhibits food emptying. In layman terms Gastroparesis is a paralyzed stomach which does not allow me to eat normally. For 3 months I would be scared to fall asleep because I didn’t feel like I would wake up again. At first it’s scary but at one point you come to terms with the possibility of never waking up again. The thing that kept me scared of never waking up was leaving my family to miss me longer than they knew me; I was terrified I would be the reason my family would never be the same.

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     December 12th, 2021, is a pivotal day in my life. It’s the day my life really changed forever; it’s the day I got my first ever feeding tube. My case of Gastroparesis is considered severe and only about 30% of people with Gastroparesis will ever need a feeding tube. I happen to be one of the unlucky people that could not manage my condition without a feeding tube. I remember the drive to the hospital that day; my mom drove me and I just remember sitting in utter silence because I was terrified. I used to cry getting a nasal swab and now I have to get a 50 cm tube shoved down my nose. I walked into the hospital knowing this day would change me forever. I don’t remember much until I reach the interventional radiology room because my mind was just racing. When I walked in it felt like my world stood still, I looked at the procedure table and the radiologist who would place my tube. I had told them how terrified I was on the phone, so they understood my feelings just by the look on my face. 

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     The radiologist smiles at me gently and says: “Hello Miss Addeson, are you ready for this?” I just look back at him and shake my head with tears welling up in my eyes. He notices my fear and comes up to me and rests his hand on my shoulder. He says: “Don’t worry we will take as much time as you need! I know this is scary and I’m sorry you have to go through this. I will do my very best to keep you as comfortable as possible”. Hearing this eased my anxiety slightly and I could feel my body relax slightly. He had two nurses working with him, one whose job was fully to just help me relax and be comfortable. She walked over to me and asked what my stuffed animal's name was; I had been clinging to it harder than I even noticed. My best friend had bought me it for this procedure specifically. I hadn’t named it yet, so she helped me come up with a name; we ended up naming it Ellie the Elephant. After that she looked at me and said: “Are you ready to start?” I look at her nodding as I walk towards the table. 

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     I lay down and they have me put the stuffed animal off to my side so they can use the X-ray for the placement. The nurse whose job was to comfort me sits by my head and stroked my hair while the Radiologist explained what he would do before starting so I was prepared. He starts to explain: “Ok, so I will start by putting a big syringe full of numbing gel into your nostril and I’ll have you swallow it so that it numbs your nose and throat to help with the discomfort. I then will put the tube into your nostril and get it to flip down to go into your esophagus. After I get it there I will tell you to swallow as hard as you can to try to get the tube into your stomach. After that it will just be me trying to maneuver it into place. You will probably feel a fluttering in your stomach but it shouldn’t hurt. After I get it in place we check it on the x-ray with some contrast and once we confirm the placement, I just tape it to your face, and you're done!” Having him explain it in detail helped me because I knew what to expect. I nodded to him that I was ready and he started to place the tube. My mind has blocked out this experience to the point where it just feels like a story rather than something that happened to me. I was so relieved when it was over that I let out the breath of air I hadn’t realized I was holding in. The nurses all told me how well I did and how proud of me they were, but I was just relieved that it was over.

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     Over the next 6 months I would have to completely readjust my life to living with a feeding tube. At first, it was extremely hard, I felt ugly and less than everyone else around me. I had always been pretty invisible throughout school which honestly, I liked because no one paid me any attention. Now coming back into school with a tube on my face all eyes were on me. I remember the first day coming back to school with my feeding tube for the first time ever. I wanted to cry because immediately everyone was looking at me. I had always been the quiet girl in the back of the classroom, the one who blended in, but as my health took such a drastic decline, I found myself thrust into a spotlight I had never wanted. When I had first come back to school, I was frail, my cheeks sunken and energy depleted. My situation had made me the center of attention overnight. Friends and classmates who had barely acknowledged me ever before were suddenly concerned, rallying around me like I was some sort of entertainment for them. The whispers in the hallways transformed from gossip to genuine support. “Did you hear about Addeson?” they’d say, a mix of admiration and pity in their voices. I felt like a charity case and it honestly made me angry. Every well meaning inquiry about my health was a reminder of what I had endured; the nights spent crying from pain, the relentless cycle of hospital visits, and the feeding tube that had become a central part of my life which served as a permanent reminder of my situation. While my peers were attending parties and planning senior trips, I had to be focused on recovery, learning to adapt to a new normal that included small bites and daily tube feeding instead of pizza and late-night snacks. 

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     I would not let new people close to me because I felt like I couldn’t trust anyone's intentions anymore. It was honestly such a relief when school ended, and we prepared for graduation because I no longer had to feel so singled out. On the other hand, I also had made it through the worst year in my life when at some points I was worried I wouldn’t survive to graduation. There were many complex feelings for me going into graduation because of all that I had to endure over the last year.

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     The auditorium was filled with the overwhelming chatter as my classmates shuffled into their seats, the air felt thick with anticipation. I sat at the edge of the stage, with my heart racing. It felt surreal, this moment that had seemed so far out of reach just months ago. As I stood to walk across the stage my heart raced due to a mix of excitement and one of my many conditions I had developed. It wasn’t just a celebration of academic achievement; it was a testament to survival. As I stepped into the spotlight, I felt the weight of every struggle lift even though it was only for a moment. The audience’s applause rang in my ears, and for the first time in a long time, I felt seen for who I was, not just the girl who had been sick, but the girl who had fought her way back. I had survived the year that at many moments I didn’t think I could make it through. As I made my way back to my seat, a sense of hope blossomed within me. Life was uncertain, but I had proven I could face whatever came next. The struggles I had faced had changed me forever, but in that moment, I finally felt I was ready for whatever the future held.

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     Reflecting on my journey, I am often shocked by the resilience I’ve developed through the struggles I’ve faced, but it also saddens me because of everything I have been forced to endure. When people ask how I’ve managed to remain optimistic through something so many people have told me they could never get through, I realize it’s been a blend of “faking it till you make it” and genuinely finding purpose in my pain. Over the past eight years, I’ve encountered unimaginable hardships, but I have also been given a unique perspective on the world. My chronic illnesses have opened doors to experiences and connections that I wouldn’t trade for anything. I realize that while my struggles have made me who I am, they have also led me to a larger narrative of resilience. I’ve learned to embrace my story, finding joy in the connections I’ve made, and the advocacy work I’ve taken part in. My journey is forever continuing, but I’ve proven to myself that I can face whatever comes next with optimism and the incredible support of those around me.