Since birth, I have been considered a “medical mystery” and have spent the past 20 years searching for answers. Early in elementary school, I learned that it was best to hide everything about my health and how I was feeling. I wanted to avoid the embarrassment I faced whenever I told someone how I felt, and they did not believe me or assumed I was exaggerating for attention. I learned the hard way that teachers, parents, friends, coaches, doctors, practically everyone, were incapable of understanding what I was experiencing. I found it best to pretend that I was happy and healthy since that was how I looked and only let my guard down for very few people. I got used to doctors not knowing why something was happening and then telling me I was perfectly healthy. I struggled with maintaining faith in the medical system because even when it did not seem possible to experience any more pain while surviving, they offered no help. The few doctors who listened told me that it was best not to get my hopes up and accept that I may never know what was causing my symptoms. I have gone to every specialist and doctor recommended, have unsuccessfully tried at least 50 medications/treatments, and have found that instead of my symptoms getting better over time, they have intensified. Through all the pain and suffering, all I ever wanted were answers to understand why I experienced so many symptoms. After 20 years of searching, I was diagnosed with Hypermobile Ehlers Danlos Syndrome (in addition to previous diagnoses and comorbidity diagnoses of EDS). After getting answers, I thought I would feel overwhelming relief, but after reading other people’s stories with EDS, I realized that almost every story was like mine. They were disregarded, misunderstood, told they were healthy, given no help, and forced to pretend that they were fine until they would finally get diagnosed after years of searching. Since EDS is a rare condition and is often misunderstood even by medical professionals, I feel that the best way to spread awareness is by sharing my experiences. 

          I assumed chronic pain was typical for everyone at a very young age because I never knew life without it. It has always been normal for me to be constantly in pain, to get frequent injuries that never healed, for medications not to work, to have my skin turn purple, to be covered in rashes, to get sharp pains throughout my entire body, to have trouble breathing, to pop my joints back into place, to throw up randomly, to feel dizzy and fall, and the list could go on and on. It has always been normal for me to feel an intense amount of pain in a spot for a couple of months and then become immune to that pain to the point where I do not notice it unless I specifically think about it. As this occurs, and I think it is impossible to feel any more pain, a new symptom pops up and consumes focus. The cycle continues, and I am forced to accept the additional pain as my new “normal” because I have no other choice. I have struggled through this cycle but have always been able to get used to what I was feeling. However, this cycle and my overall health were interrupted by a head and neck injury in 2015.

          The injury caused chronic and progressive head pain beyond any pain I had felt prior. I continue to experience cognitive symptoms, spine pain, dysautonomia, nausea/vomiting, along other symptoms. At its worst, I cannot imagine anything being more painful and forced to spend the day and night curled in a ball, unable to sleep, talk, or move. I have gone to many specialists and tried every medication/treatment recommended but have yet to find anything that relieves the pain. Seven years after the injury, I was diagnosed with craniocervical instability and idiopathic intracranial hypertension. 

          I want to clarify that I do not pity myself for any of my experiences and I do not ask for anyone’s sympathy. In my lowest times, I have learned to appreciate these experiences. In a matter of understanding perspectives, I have grown to be grateful for all the pain that I have gone through as it has made me who I am today. It has pushed me to develop a unique form of maturity, responsibility, and control at a very young age. It has changed my outlook and how I interact with others because you never know what someone has going on in their life. It is my normal, it has always been my normal, and I do not know life any differently. 

          Instead, I ask that people become more open to understanding EDS and recognizing the reality of chronic illnesses. I recognize that no words could accurately describe the experiences and that people will not fully understand it without going through it themselves. However, I think it is critical to try. Chronic illness is something you never get a break from, can never escape, and rarely if ever, experience relief. I hope that sharing my experiences promotes awareness for EDS and encourages others experiencing difficult health circumstances to advocate for themselves. If you have been struggling to find answers, whether medical-related or not, I know how difficult it is. I know how tempting it is to give up, but you will eventually find the answers you need if you do not lose hope. It may take decades, but it will eventually come your way if you remain strong. You must continue to make the most of your life and keep hope in your heart.