My story begins at the tender age of 23, when I was looking forward to starting graduate school and raising my son, who was one year old at the time.
That day in August 2007 still remains very vivid in my mind, as I recall sitting at my desk at work, enjoying what felt like one of the best days thus far.
Then I received a phone call that changed my life forever, and I heard the following: “Shenae, I don’t know how to tell you this, but we received your test results and they appear to look just like your mother’s, which means you, too, have lupus.”
Initial Thoughts & Shock
In that moment, I sat there in shock and disbelief. I instantly felt like I was given a death sentence. I mean how could I – a seemingly healthy 23-year-old – be diagnosed with something that I knew very little about? I started to think about how long I would live or whether or not I would see my son grow up. Or even if I could have any more children.
I was astonished. Only two years earlier, my mother was diagnosed with lupus, and it was so disheartening to see her endure all that she did. I witnessed the negative impact that lupus had upon her (e.g., undergoing chemotherapy, multiple medications and doctor appointments).
On the other hand, I was finally able to have a name for the physical symptoms that I was experiencing. Prior to that phone call, I was suffering from joint pain, extreme fatigue, and rashes on my skin.
Choosing to Live
Although I knew that something was wrong, being able to identify it as lupus pushed me to then get closer to my mother and to learn from her how to fight this disease, to prevent it from overcoming me, and to not be defeated by it.
I chose to live and stay in the fight.
I must admit that it took some time for me to fully accept having lupus, but once I did I continued to strive to achieve my dreams! I started my Master’s degree in Professional Counseling, pursued a career in the military, and later began my Ph.D. at Fielding Graduate University.
For the next several years, life seemed to be fine and I was able to get back to the old me: no pain, no sickness, and seemingly carefree. I felt very fortunate to be able to go for 1-2 years without any symptoms, and when I did have a flare, they were often quite mild. I attribute the stability to having an excellent support system, exercising, engaging in relaxing activities and doing things that I loved.
Lupus, the Ever-Changing Illness
Just when I thought I knew it all and I had lupus figured out, I was proven wrong.
In fact, halfway through my internship I began to experience increased flares, changing symptoms, and persistent fatigue. At that time, I was unsure as to why this was happening. After all, I was exercising, getting adequate rest, enjoying time with my family, and not doing as much at work.
I would ask myself, “So what am I missing?”
Sadly, this very experience is what makes lupus such a mystery, because symptoms can change unexpectedly and are different in everyone. However, given that I was away from my family and my support system, I knew that I would not be able to get through this alone.
How I Fought Back
I informed my supervisor about what was going on, and she was more than happy to help me better manage my caseload and work schedule. I was also allowed to utilize paid time off in order to attend scheduled doctor appointments, and I focused on nursing myself back to health. I utilized positive self-talk to help keep me focused on reaching the goal of obtaining my doctorate because I was so close to earning it.
I decided to develop a detailed self-care plan that included a set exercise regimen in which I engaged in hip-hop cardio exercises 2-3 times per week, did abdominal work-outs 2-3 times per week, made sure to eat at least 3 main meals per day, took my children on outings over the weekend, enhanced my spirituality, and learned to listen to my body.
I also learned that if I felt tired, I knew that I needed to rest and not push myself any further. I had to learn to leave work at work and really focus upon my health because if I had to be hospitalized, nothing I did would matter.
Although I consider myself to be concerned and caring towards others, this time I felt like I was the one that truly needed help. Because I was alone and away from my home, I had to set a routine and stick to it. Whenever I became frustrated, scared, or depressed due to periodically feeling defeated, I would communicate my concerns with my husband and he would help me reframe those negative thoughts and emphasize my goals and strengths.
Having support from those I loved allowed me to be persistent in my efforts to not lose sight of my dream and to not allow lupus to win. I had to remind myself that lupus does not define me, but I define lupus.
Lupus will not be my scapegoat nor will it be an excuse. Lupus will not make me feel ashamed nor will it prevent me from being successful. Thus, my goal is to advocate for those with lupus and to be living proof that anything is possible with perseverance and endurance!
With that being said, I want those who suffer from lupus to realize that having lupus does not mean that it’s the end of the world or that you have to stop pursuing your dreams. You can still accomplish whatever you set your sights on, although you may have to modify how you get there.
So be sure to seek and attend medical appointments, take your medication as prescribed, try to exercise if possible, eat healthy, relax, laugh, have fun, and most importantly, live!
- How to Develop Your Professional Identity as a Counselor - April 17, 2017
- Having a Chronic Illness During Grad School & Internship - July 25, 2016
Thank you so much for sharing your story! I too am a mother and doctoral student living with lupus. I was diagnosed during the 2nd year of my PhD program, 4 years ago now. I start internship next month so I very much appreciated learning how you navigate limitations and flare ups. I am so grateful for your candid sharing! It reminds me that we are not alone. We are survivors and thrivers!
CommentThis caught my eye because I’m a cancer thriver and after reading it was thinking of sending this to a dear friend that came to mind named Monica 🙂 lol
Thank you so much, Shenea for this! I’ve been wanting to read this post since the day it arrived in my inbox. I am a Lupus patient myself and was on the verge of death earlier this year, due to highly aggressive symptoms which prolonged me receiving a final diagnosis. Everything from the possibility of having Hepatitis to Cancer was thrown at me. On top of coming to terms with such a difficult disease, my symptomology presented with nueropathy. Both my hands and feet were completely numb, and I lost the use of my legs for about 3 months. All of this occurred while in my very last semester of grad school. My mother had to wheel me around campus as I tried to finish my classes even it if it was for only an hour at a time. With a lot of faith, prayer and determination I graduated and now work part time at the center I interned at. I am still recovering and still have numbness in my feet, but thank God I can walk again! For those who have suffered or are currently struggling, keep the faith and fight the good fight. You’ll get through this!
Thank you so much for sharing your story. I was diagnosed last year with Acute Lymphoblastic Leukemia. At the time I was one class away from graduating a Masters in Counseling program. I put my life on hold to heal but now a year later I am in remission and finishing my career. It has been one of the most difficult life changes I’ve had to work through but am now looking forward to a career in counseling for the oncology community. Your story is inspiring and it’s nice to feel I’m not alone. Keep fighting the good fight!