I am a 20 year old college student who was diagnosed with a rare disorder last year. I went from living in my first apartment, attending classes, making friends, thriving, and loving life, to then struggling to get out of bed each day. I went to numerous doctors and was continuously told that it was "just in my head" or that it was "because of my weight." I knew in my heart that they were wrong. I had realized that the pain that I had felt for most of my life was not normal, and that something felt truly wrong with me. After months of rejection and self blame, I finally found a doctor who recognized my symptoms. They diagnosed my with Ehlers-Danlos Syndrome, and it changed my life forever.
With finally getting the diagnosis that I had searched relentlessly for, I thought that my quality of life would improve. I was wrong. My symptoms continued to get worse. I got sicker and sicker. It hurt to move. It hurt to breath. It hurt to live... I stopped attending class because it was too hard to walk to school. I stopped hanging out with friends because I would get exhausted after a few minutes with them. I didn't have the energy to cook, so I ended up ordering all of my meals from DoorDash. I started gaining weight from this and my inability to move without pain. My once loved apartment became a prison that I felt trapped in. I spent many days in my bed. Looking back at that time, I cannot distinguish night and day because they all melded together. I was in a dark place.
My breaking point came that summer. I broke my lease for my beloved apartment, packed up my room overnight, and moved home. My parents have always been my life savor. They held my hand and carried through my hardest time. Moving home was the best option for me. My mom stepped in and helped me develop a daily routine that my health could handle. I got help from a therapist to grieve what I thought would be my life. I rearranged my college schedule to make it easier for me, and I got school accommodations. My family stood by my side throughout all of it. I lost friends because I couldn't give them the energy that they deserved. I was lonely, but I was working hard to get to a better place.
I am in such a different place now. I have accepted my chronic illness, even though I still struggle at times. I have been able to focus more energy on school because of all of the help my mom has provided me. I have grown so much closer to my family, and I am so thankful for that. I wanted to explore my passions now that I had hope back. I started crocheting as a hobby and I fell in love. What started as a hobby turned into a small business. Between marketing, videography, and creating cute plushies, I loved every aspect of it. I have started showcasing rare disorders in my "All Are Worthy" series. Bringing awareness to rare disorder is so important, and I am so thankful to have a platform to do it. This business has given me back my passion. I am so thankful for how far I have come. I still struggle with chronic pain, but that is only one part of my journey now!