Part 1 (Xa)
In 2015 when my best friend was diagnosed with Lupus, I kind of lost it. At the time, we were both fresh out of college, 19-years-old, healthy and on our way to bigger and better things. But everything started going downhill after I noticed my bubbly friend was down and out with a cold that lasted over three months. By the second month, red flags started popping up in my head, and I got worried.
“Why are you still sick,” I would ask.
“I have no idea, this cold just won’t go away,” she would respond.
“That’s very odd sis, your colds don’t last this long.”
“I know, I know it’s really weird.”
Actually, weird is an understatement. I’d been close friends with this girl for years and I just knew that something was very, very wrong. Then, to add to my suspicion, came other symptoms – a strange rash, thinning hair, extreme fatigue and that cold was still there, four months in! I remember interviewing two lupus patients on a radio show that I hosted at the time about the signs and symptoms of the disease. After we were done I rushed home to call my friend and flat out asked “could this be lupus?”
We didn’t exactly have a great idea of what the disease was about, or if she had it, but from the information I received it seemed like a very accurate assumption. So I wasn’t entirely shocked when the tests came back positive for Lupus. After the results, I spent two days straight googling the hell out of it; I read everything I could and then, I cried. I honestly thought that this thing was going to kill her, and it almost did – several times.
God’s grace is the only explanation I have for us surviving those hellish months. In those moments, I wasn’t just losing my friend, I was losing a part of me and I couldn’t deal for a long time. But looking back, I can say that we’ve changed for the better because of it, and I have learnt many important lessons that I think would have not happened so quickly otherwise.
I understand how powerful friendships are. I know, first hand, what true love looks like and what it’s supposed to feel like. I know what it is to make sacrifices for the people who need me the most. I would do anything to make sure that my friend was okay, which was shocking because I always thought that I was selfish.
Through it all, I was absolutely terrified, and putting on a brave front was the hardest part. But I could not allow myself to crumble. I had to let her know that despite everything, I was here, and she could lean on me for support. The first six months were torture, so many things changed and at this point I had no idea if she would live till I finished work that day. At times, she was barely recognizable, not even her voice was the same. But that just showed me that my friend was far more that her outward appearance. This young woman has a heart of pure gold and she made me so proud to be her friend.
My faith was tested and my patience was tested. I even lost friends over this because no one understood how bad the situation was or how difficult it was for everyone involved. Though many had good intentions, asking me questions that I could not answer was overwhelming at best. How do you say, “Well my friend is dying, but I’m holding strong” and then explain what that meant? I didn’t want to explain. I know now for a fact that no one can fully understand a situation that they are not affected by. Once you’re not in the situation you have no idea what that other person is going through. And so, I’ve learned to be more empathetic, caring and kind to anyone and not just when they’re sick.
One of the most important lessons was understanding that the future is not mine and I have to make the best of every moment. I’ve since made a conscious decision to live a more fulfilling life, and I haven’t regretted it since. Through it all, Shawnelle taught me how to be brave even when I’m afraid and that fear should never cause me to stop fighting for what I want. She fought with all her might to live, through kidney failure, countless hospital visits and a constant string of bad news. She defied all odds and here we are, almost two years later, better, closer and stronger than we’ve ever been. I’m so thankful for my best friend and we’re kicking Lupus’ ass together!
Part 2 (Shawnelle)
I didn’t know what Lupus was. I knew that my mom’s eldest sister had passed away because she had been misdiagnosed with the disease, and that another was still living with it; but I didn’t know what it was. Still, that did not stop me from panicking when the doctors told me that all my symptoms were pointing to systemic lupus. I cried and wanted to disregard their ‘facts’ because nothing in me wanted to believe or accept that I had an autoimmune disease.
Since being diagnosed, my life has changed drastically. Initially, I had issues with accepting the changes. I didn’t know how to wrap my mind around popping 13+ pills a day, but I did it anyway. I had to come to terms with the fact that I couldn’t do everything that I was used to doing. I couldn’t go out the way I wanted to and I had to start dressing differently to (1) protect myself from the sun, (2) keep myself warm when it was cold out and (3) cover up my scars (which are actually stretch marks), because I was too conscious of them to let them show.
I had to come to terms with knowing that I could be okay today, but wake up in pain the next day. That sometimes my plans had to be cancelled because I’d get a fever unexpectedly or I’d be sick with diarrhea and vomiting. It was not easy adjusting to this new life and I think that it took me about a year to do it and to actually feel like myself again.
Within that time I would often ask God why. Why did this have to happen to me and why did it have to affect me so badly? Here it is that at 19 years I had developed a kidney disease because of lupus (lupus nephritis), hypertension (high blood pressure), complications with my heart and complications with my vision that no doctor could actually explain to me. I felt like everything had gone downhill and I was just sitting at rock bottom. I think God was patient with me because he knew that I would eventually find the answer. I can safely say that this trial and my little dance with death has made me a much better and stronger person. I have become more thankful for the things and the people that I was so richly blessed with.
Can you imagine that my friends were so great that on hearing that I was hospitalized and in the ICU, they all sent voice notes to remind me that they were praying for me and that they loved me? My best friend went the extra mile. She sent videos and kept me updated on everything that was going on in her life, almost as though nothing had changed. She even sent me a ‘get well soon’ box with my favorite snacks, some colorful socks and other items that she knew would make me happy. Their efforts gave me hope and something to look forward to each day. My family was also great as those closest to me hopped on a boat or a plane just so they could visit me for a week. It was honestly these little things that pushed me to hold on when I was at my weakest.
I’ve learned that time really can heal wounds. I have also learned how to take care of myself and pay attention to my body. It really does speak to you, and it’s important to listen. I have become more health conscious and disciplined. But most important, I have managed to deepen and strengthen my relationship with God, and with my loved ones. He is now my everything, and in him I have found love, happiness and total and complete peace.
With time, living with lupus has become easier. There are days when I worry about things like, whether my kidneys are doing what they’re supposed to and whether my body is swelling up again, but I give that to God and everything is okay. My family and friends continue to be very supportive. They encourage me to continue to pursue my dreams, believe in myself and work against the odds. They’re always there to make sure that I’m feeling okay, both physically and emotionally and to make sure that I’m never actually going through any struggle on my own.
I am okay, and I will continue to be okay, because the same Lupus that I was so afraid of when I did not know what it was, no longer phases me because, it has made my will to live, thrive and conquer that much greater.