Finding out that you have to continuously experience pain for the rest of your life is not an easy thing to process when you are in your early twenties, when you are beginning to live and to understand yourself and your body. I was an energetic and busy junior in college when I began to experience the first symptoms of my disease. I considered myself a healthy person and did not understand why, all of the sudden, my body was beginning to hurt. I had moved to the United States when I was fifteen years old, following the dream I kept of expanding my horizon and finding bigger, better opportunities in this country. I was young and felt invincible, so I moved to a foreign country to begin again without the rest of my family and with nothing in my pocket. I did not speak English and was faced with many obstacles the first couple of years after moving here; however, through my determination to succeed in this country, to take advantage of the many opportunities that it had to offer me, I was able to graduate high school with honors and began to attend the University of Nevada, Reno.
Once in college, I was so focused on paying for my education that I did not pay attention to other important aspects of my life, such as having a health insurance. Whenever I needed to go to the doctor I just went to the campus health center or, at most, to Mexico where my parents live. When my lower back began to hurt, making me unable to sit or get out of bed in the mornings, I went to the Student Health Center at my university and I was told that I needed an MRI. I knew I could not afford to get an MRI here, not without insurance, so I flew to Mexico where I was able to get the MRI done and was seen by a specialist. I was told that I had an inflammation of my lower back and was given anti-inflammatories that made me feel great and, after a week of no pain, I came back to the United States to continue with my college life. At the time, I thought that everything was fixed.
One of my biggest dreams has always been to go to Italy, so a semester after I got my MRI done, I was able to gather enough resources to pay to study abroad in Turin, Italy. I was ecstatic; I was living out my dreams, my hard work was paying off, I was to study abroad in the best place on earth! All seemed well. But then my ankle and knee began to swell before I left for my study abroad program. Of course I had gone to the doctor at school to get my ankle checked, however the x-rays showed that there was nothing wrong with my ankle and knee and I was told to go see a rheumatologist. Reno, the city where I live, is very small and does not have many rheumatologists. The few that are available were not taking new patients at the time. On top of this and with no health insurance, my wait to see the most available rheumatologist was up to three months long. I was leaving to Italy in days. I swallowed the pain, convincing myself that I would be okay if I took care of knees and ankles, and continued my journey to Turin. I had made one journey once before, to the US, against many odds. I thought I could do it once more. Sadly, I was only able to last two weeks in Italy before I began to lose mobility in my legs and my back began to hurt again. This time my experience of pain was different; I was in an entirely new country and I was unable to move. Even with my limited access to healthcare in the U.S., I wouldve had greater bearings than I did in Turin. I was devastated and knew that I had to leave before my ability even to sit on a plane was lost. I went directly to Mexico where a rheumatologist finally saw me and I was diagnosed with Ankylosing Spondylitis.
My financial aid was suddenly taken away on the grounds that I did not complete my semester abroad. I was left with a huge debt to pay off to the university, something I had for years worked hard to avoid, and at the same time was told that I would feel this immobilizing pain forever. I had to take a semester off from school and spent that semester at home recovering from the stress and shock of the events. I was in a wheelchair for nearly two months until I was able to use crutches and eventually able to walk again by myself. This was probably the hardest time of my life. I experienced a deep and enveloping depression for the first time and I do not think that I would have been able to get out of it if it wasnt for the support and love of my family and close friends that stayed in touch with me while I was in Mexico.
After so much regret and sorrow, I decided that I needed to be the person I wanted to be again, despite my disease. I had to accept it, without letting it define me. I began a new diet that cut out all processed foods, lactose, and gluten and began swimming everyday for an hour. I saw my pain lessen, my mobility and mental health improve, and I knew it was time for me to go back to school in the United States. I was determined to pick up with the dream I had momentarily abandoned; the only difference was that I had to find a new path towards that dream, a path paved by my disease. When I moved back, the change of environment and food was not easy. I also had to get in touch with a rheumatologist in Reno, as soon as I possibly could. The transition was harsh on my body, but I was set on not letting the disease consume my life again. I discovered that the more gently and consistently I moved, the less stiff I felt, so I began taking yoga classes at the university. I reached out to the Disability Resource Center on campus and I talked to my professors about my journey with this disease. Everyone was very understanding. I had to make some changes in my life but everything, to my surprise, was working out.
Today I am a whole new me, a me that I finally like and accept, a me that is not fighting the disease but learning to live with it. I advise that other students living with this disease, or really any disease that involves chronic pain, be patient with their bodies. It is difficult and very different to attend school when you are experiencing such big changes in your body, but it is definitely doable. I was so afraid to come back to school since I did not know how my body would react to the stress and long hours of class. Nevertheless, something I learned from my experience was that everybody is different and our bodies will react to everything in very singular ways. The best way to understand this is to take the time to know your body. Know what you like and what makes your body feel good. Find a routine that allows your body to maintain a healthy balance and you will find balance in your life. For me, I stand in class sometimes to stretch. I swim three to five times a week and do yoga as much as I can. It is also very important for me (and I believe any one in a similar situation) to find ways to minimize stress, since stress exacerbates the pain and affects mental health. I am currently taking a ceramics class that helps me forget about all of my worries and clears my mind. I am still eating healthy and most of all, I am listening to my body. Lastly, reach out to your close friends and family and use all of the resources available at your school or in your community. Trust me, people want to help you and most of the time they will do everything that is in their power to make you feel better. Do not feel ashamed. Reach out for help from those around you whenever you might need it, as I do. After all, suffering from a chronic disease is something that nobody chooses to have.
