Learning to Let Go
I officially received my first chronic illness diagnosis in November of 2015. It was a surreal moment for me after fighting for over a year just to have a doctor hear me out. It had been so long since a doctor had listened and actually believed me, that it was hard to accept I could finally be diagnosed. I was relieved that a doctor had actually cared enough to hear me out and help me get the answers I was so desperate for. Looking back now its kind of sad how relieved I had truly felt that day when in reality my doctor was just doing his job like he was supposed to do. I was so happy to have answers and a plan to finally help me feel better. I was informed that there was no cure and I would live with POTS for the rest of my life. However, I was fourteen and giddy at even a remote possibility of getting a semblance of my old life back.
I did everything I was told could help by my doctor and committed myself to getting better. I went on medications to help me manage symptoms, made multiple lifestyle changes and even took a semester off of high school to go to a treatment center in Dallas. It had been hard to take that semester off of high school, but it wasn't like I had much of an attendance record anyway and I had convinced myself that everything would go back to some semblance of normal after I devoted that semester to my health. I guess I was just naive and hopeful that I could manage it well enough that my life really wouldn't change that much. I fought my way through the rest of high school focused on the goal of catching up and graduating on time. I continued to see my doctors, take meds, follow my lifestyle changes, but otherwise didn't give my body the attention it needed. Instead I put all of my focus and determination into graduating with high enough grades to get the full ride scholarship I wanted. I fulfilled my goal I graduated high school on time after completing my courses half online and half in person. Not only did I graduate on time, but I also received a full ride scholarship to a college not far from my home and doctors. I felt like a fighter since I had overcome so much and worked so hard to make it happen. I didn't realize until later that I had made a crucial mistake, one that I wouldn't realize the full impact of until later.
I went off to college and got set up with disability resources to ensure that when I had bad days it would not effect my academics. I stayed in the dorm and happened to get an incredible roommate who was completely understanding and accepting of my chronic illness. I was fine for the first month or two continuing to take my meds and practice my lifestyle changes. After the first month or so things started to go south. My bad days started to greatly out number my good days. I struggled to eat and lost 20 lbs in two weeks. I relied on Ensure to try and get calories into my body because it was the only thing I could tolerate. It was so hard even to just walk around because it became so painful. However, I still continued with school doing assignments from my room or going to class when I could muster enough strength. It was difficult, but my accommodations from disability resources made it possible. The breaking point came one day when I had mustered up enough strength to go to an early morning class. I was sitting in class when the pain suddenly became overwhelming and I felt like I was on fire. I left the class to go outside and try to cool off and let the pain subside. After taking a few steps outside I passed out from the immense amount of pain I was in. I woke up on the ground barely able to catch my breath from the amount of pain I was in and burning up despite there being snow on the ground. I was terrified and had to give myself a few minutes to catch my breath but the pain wouldn't subside. It took me over an hour for me to get back to my dorm after the pain had subsided enough to be bearable. My mom came and took me to a hospital where I was admitted for five days. Some tests showed concerning and abnormal inflammation, but ultimately they couldn't determine what was wrong with me and I was discharged. My parents begged me to not go back to school, but I didn't want to lose my scholarship after everything I had been through to get it. I went back to school and still saw doctors every week, but no one could figure it out.
It continued like that until my first year was over. The pain was still a constant presence in my life, but I had figured out if I didn't move much it was tolerable. I stayed in bed all summer, only getting out of bed to go to more doctors who didn't seem to have answers. With no answers and a desire to keep my scholarship I went back to school for the start of my second year. That semester I only got out of bed to do school and the pain continued to be a dominating presence. During that semester I was able to set up an appointment at the Mayo Clinic in Minnesota during my winter break. I was determined to finally get answers and was tired of living in pain. Winter break came and I flew to Minnesota and spent a week being passed around to different departments and subjected to a series of tests. I was finally diagnosed with pelvic floor dysfunction and a possible stomach motility disorder. I was told that I would need to go to physical therapy to release the muscles in my pelvis/stomach which was contributing to my ever present pain. Based on the amount of pain I was in it could take a couple months of physical therapy to see a difference. I would need to commit a lot of time and have to limit my stress. On top of that there was still more testing to do for the possible motility disorder and my symptoms were still out of control. What I had thought would be an easy fix once I found the right doctor turned out to be much more complex than I thought. It was recommended that I take a semester off of school and focus on my health.
I flew home feeling pretty numb. My plan had been to return to school which would start a week after I got back. I was all signed up for my classes and everything. I was naive to think I could spend a week in Minnesota and all the problems I had been experiencing for over a year would be solved. I was devastated, I didn't want to lose my scholarship or drop out of college for a semester. It felt like everything I was working so hard for and fought so hard for was gone in an instant. It took me almost two weeks after school started, until the last day I could drop classes, to finally withdraw from all my classes for the semester. I don't know why it took me so long, I knew I couldn't go back. I think maybe I was hoping some sort of miracle would happen and I would suddenly feel good enough to return. I was exhausted, so tried from constantly fighting, but withdrawing from my classes felt like I was giving everything up. What would my life look like? How would I recover from this? Could I recover from this? How did it get this bad?
These questions swirled around in my head for the next couple of weeks as I mourned the life it felt like I was being forced to give up. Everything had gone to hell and I was left trying to figure out how it had gone so bad. I came to the realization that I had never truly accepted my chronic illness diagnosis. Sure I did what I was supposed to and saw the right doctors, but I didn't adjust my expectations so that they were realistic to my new reality. I insisted to go on pretending like everything would eventually become normal again. It wasn't totally my fault, I had finally gotten a doctor to believe me when I got my diagnosis, but that didn't mean the people around me suddenly understood. Just because I had a name for what I was going through didn't make it any less confusing that I looked perfectly normal. I would try to explain it to family, classmates, teachers but no one seemed to get it. It was a complex chronic condition so it wasn't like I could give an easy to understand spark notes version. I just got things like, "well you look good", "it will get better", "Im sure you will grow out of it", "why don't you work?". Just getting out of bed everyday and doing school took everything from me and yet people wanted more, expected more. I stopped talking about it and shut that part of myself out as much as I could. Of course I still had to deal with symptoms and managing them everyday, no one knew the extent of what I went through on a daily basis except the people closest to me, who never judged me and just tried to understand. When classmates would ask why I was absent I would give vague answers I didn't want to deal with the confusion or jokes that had occurred in the past. I essentially created two realities for myself a public one and a private one. In public I pretended that everything was fine and even if it wasn't I wouldn't let it show. In private I would try to rest and recover from the front I put on in public so that I would be ready to do it again the next time. I thought I was strong for being able to hide what I went through when really in the long run it was my greatest mistake and my biggest weakness.
Reflecting on this after dropping out helped everything make a lot more sense. Living with these two realities had become normal to me, something I just did without thinking. I had always said that I didn't care what other people thought of me, but that's a lot easier said than done. People who found it hard to understand would be quick to judge and paint me as someone I am not. Many people would say, "who cares you don't have to justify yourself to them", but it's not easy to feel that way when they think that I am just lazy or I made it up or I just want attention. Many didn't say it to my face, some did, and even those who didn't I could hear the implication in their questions and words. These were things that I would hear from doctors before I was diagnosed. Things that had made me doubt myself and if I really was sick or if it was my mind playing some kind of cruel trick. It was unfair that people could just make snap judgments like that about my character after everything I had been through and still go through. It was easy to see why accepting my chronic illness wasn't easy and trying to just deal with it was an easier option.
This realization was hard to swallow. I had let my fear of not living up to the expectations others had set for me rule my life and tried to hide an entire part of myself. I spent the entire semester I had off not just focusing on my physical health, but also my mental health. I reset my entire perspective I had of my chronic illness. I set expectations for myself and let go of the expectations that anyone else had of me. I started to be more open about that part of myself and share it with people when they asked. With my close family and friends I have started to give them more updates on what I am going through. With people I haven't known very long I still give them information, but try to only give away necessary and relevant information. Spending that semester working on myself and accepting life with chronic illness was the best thing that could have happened to me. I'm much happier, I feel more like myself than I have in a long time, and I am proud of the person I have become. I still keep my chronic illness somewhat separate from my daily life because it is not a defining feature of who I am. It was definitely a curveball and a complete 180 from how I expected my life would go, but then if everything always went according to plan life probably wouldn't be very fun. I found this quote the other day that said, "the measure of who we are is what we do with what we have." For a long time I resented and tried to ignore the impact my chronic illness had on my life and all that had gotten me was unnecessary suffering. Fully accepting my life with chronic illness felt like freedom and has allowed me to feel the best I have felt since my diagnosis.