Living with a Disease in College

Last Thanksgiving Break I was diagnosed with a disease that I thought would change the course of my life. I, like my mother and aunt, have lupus.  When the urgent care nurse found something irregular with my blood, we automatically knew that it was lupus, due to the prevalence in my family.   I remember being on the phone with the nurse who broke the news and automatically knew that my outgoing life would be soon over.

Quickly, I told me parents then texted my best friends the news. Everyone reassured me that I was going to be fine, but it did not remove the emotional numbness that I felt inside. I honestly did not know what I would endure for the next couple of weeks, months, and even years. All I knew is that I did not want to be constantly starred at like a cell in a microscope by doctors, family members, friends, and teachers.

Upon getting the initial diagnosis, I got further blood work done to finalize a treatment plan. My rheumatologist then lectured me on how I need to take extra care of my body so this disease does not get any worse.  Then came the lectures from my mother to stop doing all-nighters (which is impossible as a college student) and get quality rest each night. Nevertheless, I was living with this disease and had it hidden in my back pocket. Only my closest friends, family members, and one professor knew what I was hiding. I acted like the comments about me being lazy and irritable did not affect me, but I remember each person who made remarks.

Nevertheless, I am learning daily how to assent and embrace the disease that I have been given. The more that I accept the disease, I find that I am no longer emotionally numb and feel comfortable talking about Lupus. I have learned that there are many other college women like myself who are living with chronic illnesses every day. They have gone or are going through the same struggle that I went through my freshmen year. Here are three tips that I have learned while tackling Lupus throughout my college career.

1. Life will and DOES go on-   When my parents dropped me off after Thanksgiving Break, I broke down and begged my mother to just let me come back to Ohio with them (so unrealistic…I know). I was overwhelmed with knowing that my mother would no longer be with me at doctors’ appointments and could not tend to my every need. Soon I had to use other resources beside my parents to get me to appointments and get my medicines. Fortunately, I had a professor, big, and friends willing to take me to and from appointments. If I sat in my room and cried to my mother every week on the phone about how I could not get proper treatment, I would have made both of our lives miserable.  There are people who genuinely want help you, even if you do not have a chronic disease. I encourage anyone to utilize the resources that are in front of you and learn how to live with your disease daily.

2. Just answer questions and smile- The biggest reason why I did not want people to know about my Lupus, was the constant questions. I have learned over that people genuinely do not know what lupus is and are curious about what I am living with. Numerous times I hear “My aunt has lupus, but I really never understood what it is.”  During the beginning stages these statements really pissed me off, especially when they would add that she died from lupus.  I have learned to simply tell them that lupus is an inflammatory disease caused when the immune system attacks it is own tissues. The following question is usually, “so how does this affect you?”  I tell them all of my symptoms and give them a list of medications that I am taking. Even though I hate reciting this now memorized monologue, I know that I am educating them and they can be more aware of this disease. I simply then smile and move on to the next conversation.  Know that you are more than your disease. Nonetheless people are interested in the unique elements that make you, YOU!

3. Treat yourself like you are uniquely made- There are many times that my knees hurt or I felt extremely fatigue. During the school week, I obviously have to just fight through my pain. Still when my last Friday class comes I just want to lay in my bed until Monday. Obviously, my involvement at Hampton does not allow me to do so every weekend. When I am able to sleep in my bed for a whole Saturday, I take advantage of it. When I first got diagnose with lupus, I felt extremely lazy and guilty just staying in my bed and ordering food from the local Italian restaurant. On the other hand, I knew that my body needed a day of rest and loved staying in bed. Eventually, I had to suppress my insecurity and just give my body what it needed unwillingly. I was able to accept that it is okay to take a break. When my friends ask me to go out, I no longer act like I did not see the text. Instead I simply tell them I don’t feel well. If you have a chronic illness, do not be ashamed to let your friends know when you’re under the weather. If you go out you will just be miserable and make everyone else’s experience poor.

I would be the last one to say that living with a chronic illness is a piece of cake, and that you should just accept it in move on with your life. Actually, I urge you to cry with your friends or parents so you are not unhealthily harboring your negative emotions. It has taken me about a year to accept and embrace lupus. Having people in my life that are willing to help me conquer this disease is what I am most appreciative of. I have found that lupus is what makes me uniquely made and something that I can make others aware of. Lastly, I understand how I take care of my body is not going to be how the ordinary person takes of their body and that is okay. I am completely comfortable staying in dorm on a Friday night while my friends are at party.  I hope that my story encourages you to not be defeated by a disease or any obstacle that comes your way.