If someone would have asked me what lupus was during my first semester of college, I would have looked at them with a confused expression and questioned if that was going to be on an exam. If someone would have asked me what lupus was during my second semester of college, I would have told them that I did not know, but the disease was frequently mentioned on House – as watching House was my choice activity between doctor appointments. I had visited almost a dozen doctors, just to be told everything was in my head a dozen times. My joints ached, my chest hurt, I was covered in weird rashes, and I had a constant fever. The sun and fluorescent lights made me violently ill, my hair was falling out, and I was exhausted, but all I was being told was that I was crazy. I knew they were wrong, but as time passed, I started to believe them. Ask me what lupus is now. I will tell you that it was the reason for my craziness, the reason for my tears, and something I would gladly give back. I will also tell you that lupus is the reason for my strength and in some twisted way, a blessing.
I did not receive my official diagnosis until August 13, 2013, two days before I returned to Madison for my sophomore year. Part of me was relieved to finally know what was going on, but an even bigger part of me worried about what was going to happen. I first questioned if people would treat me differently. I suspected that things would be different and, unfortunately, I was right. “Hello” was no longer the greeting I received when approached by friends. Instead, I was asked, “How are you feeling? Are you doing okay?” I cannot say I blame them, as I know I would have done the same thing, but I longed for things to go back to the way they were before my diagnosis. Luckily, I was able to start out my sophomore year with success. I made the Dean’s List in fall and finally declared my major: Special Education. I may have dozed off a time or two while in a warm lecture hall, because I did not get any sleep the night before, but I did not let this disease get in the way of my education. I wanted to prove that I was strong to every person who pitied me, even for a second. This disease did not control my life, and I was going to do everything in my power to show that to the world.
Following my diagnosis, I joined a local support group to hear the stories of lupus survivors and receive advice from individuals who were in the same situation as me. In my first meeting, an elderly woman stood up to introduce herself. She proudly exclaimed, “I have lupus, but lupus does not have me”. Since that meeting, I have lived every day by this motto. Modern medicine has made it possible for people with lupus to live a full life and physically survive. Some have compared this illness to having a permanent case of the flu. However, with a combination of medicine, diet, and exercise I am able to lead as healthy of a life as possible. Mentally surviving this disease is not as simple. There are many days that I want to give up, stop taking my medicine, and go back to a normal, healthy life. I pray for a day that I am without pain and nausea, and it saddens me to know that many individuals with this disease never see that day. To mentally survive this disease, you have to accept the help of others. This includes your family, friends, and medical team. Asking for help does not make you weak, and I wish I would have realized this from the start. This disease thrives off the stress of everyday life, and it is important to reach out to others to stay healthy.
The biggest piece of advice I could give to someone battling lupus would be to listen to your body. If you are feeling fatigued, do not push yourself to the point of complete exhaustion. If you are sore, take some time to rest your body. Ignoring the signals that your body is giving you will only make symptoms increase in duration and severity. Although you may be able to get more work done by pushing yourself, a lupus flare is bound to happen. In addition to listening to your body, it is important to take your medication on a regular basis, regardless of how it makes you feel. Most of your medications are going to take several months to work and are going to make you feel incredibly ill. Your mouth is going to be dry, your hair will thin, and you may gain a few pounds. However, if you do not take these medications your lupus will progress. New organs will be affected by the disease, your pain will increase, and you will have to go to the doctor more often than you already do. With that being said, keep all of your appointments with your healthcare team. If you are anything like the average lupus patient, you will have at least five providers that you see on a regular basis. Some weeks you are going to have an appointment every day, and I know how exhausting that can be. Just remember, they are trying to make you feel better. Skipping an appointment because you do not feel well only hurts your situation. My final piece of advice is to get involved in the lupus community. Whether you get involved in a lupus fundraiser, join a support group, or find a lupus blog online, it is important to meet and talk to others who are facing similar challenges. It is easy to feel alone when fighting this disease, so it is comforting to find support from people who know exactly what you are going through.
In a matter of months, I went from a normal college student to a human pincushion, seeing numerous specialists in any given week. When my journey first began, I was scared and unsure of what the future held for me. It has been two years since my symptoms first began and a little over a year since I was given an official diagnosis. Although I am still faced with the reality of lupus on a daily basis, I am more confident in my future than ever before. I know I will be successful, I know I will lead a normal life, and I know that lupus will not get in my way. Lupus allowed me to take a step back from my life and realize what truly matters: family, friends, education, and God. I could choose to sit here feeling sorry for myself, but that would not fix anything. Instead, I choose to be proactive about my situation by raising awareness and taking care of myself as best as I can. I am aware that lupus could shut down my body at any given moment, but until that happens, I refuse to let lupus come out victorious. I have lupus, but lupus does not have me.
1 Comment
Kymberly Ludwig
November 25, 2014 at 12:35 amKatie,
Thank you for sharing your story! I am in love with that saying “I have lupus, but lupus does not have me.” And shouldn’t we fighters be saying that for any illness or disease we have? Reading stories like yours always inspire me to keep fighting for my health issues as well. I definitely second that comment about making sure to keep all your doctor appointments. I myself have actually been seen by my physicians and doctors for a week straight one time with diagnostic tests and consults without even being hospitalized and I swear I say I never want to step foot in a hospital ever again, but when you have a chronic illness it just becomes something you get used to and manage. Also when you find the right caring, kind, compassionate physicians it sure makes things a lot easier! Keep on fighting girl! 😉