Getting Support For Lupus While Going to College
Last updated: May 2023
I know that majoring in marine biology seems like a cliché, but I had a serious interest in the subject matter. As a child, I was fascinated with marine animals and the ocean. My parents couldn't keep from the ocean as a child. I also excelled in those subjects in high school. Living with a father who has a Ph.D. in chemistry and an aunt who is both a microbiologist and a public health professional gave me the inspiration to go far. As I said in Part 2, my parents always told me that I can do anything with my career and that lupus would not thwart my ambitions. Unfortunately, that ambition did not last too long.
Realizing my limits due to lupus
I determined that this was not the time for college. I needed to concentrate on getting better. So I returned home depressed. Growing up around college campuses and academia most of my life, meant that I saw no other path other than college and a career as a scientist. I laid on the couch for a year feeling as though I just failed in life. I learned how to use the internet and stayed up all night and slept all day. There were moments when I hit a really dark place and felt suicidal. I argued with my mother sometimes because I lost a passion for anything and everything. My best friend tried to be my comfort, but I really didn’t listen. I rarely spoke to my college friends. I really felt my life was over. I felt like I had no future. My career was no more.
At the same time, my lupus progressively got worse and I ended up in the hospital with pericarditis and arthritis with no medical insurance because I was not enrolled in school. I had stomach and intestinal problems and had to undergo a colonoscopy, again with no insurance. I began spilling blood and protein in my urine. Luckily my mother’s influence at Emory University meant that I received financial assistance and expense waivers for my medical treatment. My primary doctor was a nephrologist who saw me for free for many years. I owe a tremendous amount of my success to him. My family did whatever they could to help me out.
I lost complete hope in everything in the world until my mother insisted that I go see our family therapist. Depression and mental health were not a component of lupus typically discussed in the lupus community. The therapist told me that I am required to finish college because education is in my blood. She knew my family and explained to me how college and even an advanced degree is an innate trait. Over time, I realized after working at a law school and remembering my interest in activism in both high school and college, that I have an interest in changing policy through action. My therapist made me realize that there was more to me than one dream or one goal.
Support from family members
I had and still have so many supporters. My paternal grandmother once said, there is a big world out there and that I will probably end up with several careers. My therapist made me realize that pursuing school should be because I want to do it. I realized that I am working towards my education and my career; that I am on no one’s timeline but my own. My Uncle Bernie told me to think about my goals. He said, "even if I don't know the steps reach my goal, the important step is to have a goal and the rest will come in time." My Aunt Dee Dee, a pediatrician, suggested that I ask for disability accommodations to improve my test-taking skills. My therapist made me realize that while I may feel I need to pause my life, I do not need to pause life forever.
I realized probably for the second time, my parent's influence and their constant reminder that I can do anything and everything despite my condition. That is when I determined that I was going to study political science. I aspired to be a political lobbyist, an advocate, or become a lawyer. Looking back on it now, I realize that there was a purpose to the instances in which I paused my life that made me the man I am today.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?