After my lupus diagnosis, I learned to take things one day at a time
Being diagnosed with lupus is overwhelming. Here's one columnist's story
In the seven years since I was diagnosed with lupus, the first year was undoubtedly the hardest. The first six months were a cacophony of dietary restrictions, lifestyle changes, and medication. I left the hospital after my weeklong stint with a fistful of prescriptions, a head full of shock, and a restriction on liquids, sodium, and potassium.
I remember walking out the doors of the hospital and standing in the pickup and drop-off zone. In my head, I absent-mindedly pondered how long it would be before I was “over” this sickness. These days, I laugh when I think about this memory. I don’t know if it was pure naiveté, but the gravity of the situation hadn’t fully sunk in yet. But I’d quickly come to realize that this was not like all the other times I’d been sick. Not even a little.
Soon the days turned to weeks and there were no obvious signs of getting “better.” It became clear that lupus was not merely just a presence — it was as prominent in the story as I was, and I was the main character. Every day, I woke up and it was already waiting for me. There were pills to take first thing in the morning, pills for midday, and more pills at night.
I used to leave either an apple or a pear on my nightstand on Monday, Wednesday, and Friday mornings. Those were the days when a giant horse tablet of an antibiotic was on the menu. I forced it down three times a week and was recommended not to do so on an empty stomach.
During this period, my fatigue was at its absolute peak. Opening my eyes was hard work, let alone getting myself awake and upright to ingest the medication. In anticipation of the struggle to get out of bed, “nighttime Kristiana” gave her future self a tiny gift. Each day as I opened my eyes to see that piece of fruit ready and waiting, gratitude poured out of me.
For a while, I thought it was always going to be like that. I really thought my life was going to revolve around lupus forever. Every day, every thought, and everything else was suddenly centered on lupus. I was so deep in my own struggle that the concept of digging myself out seemed impossible. I didn’t even know where to begin or if I had the strength to start.
It’s funny, I’d been told countless times that I was stubborn, but I didn’t ever consider myself to be strong. But then came the time when being strong was all I had. I had to bounce back — just one more time. I kept telling myself that again and again and again.
Eventually, I didn’t have to tell myself three times a day anymore, or even every day. But every time I needed to hear it, I forced myself not just to listen but to believe. No matter how unstable the ground felt or how exhausted I was, I had enough to bounce back just once more!
I found my way out of the deepest, darkest hole I’ve ever known. And I did it by consciously putting one foot in front of the other until I didn’t need to think about it anymore.
Support systems are invaluable. My parents, sisters, and other loved ones are a huge part of my success. But ultimately, the fight starts and ends with us as individuals. At the end of the day, it’s our journey. We are the ones riding this crazy wave. No matter how many people are in our corner, there will still be the odd moments of loneliness. And it’s during those times that you’ve got to be your own anchor. The belief must start from within.
If today is one of those days when it feels like the universe is dogpiling on you, remember that you’ve got this. If this is the start of your journey and you feel uncomfortable in your own skin, I promise it will not be forever.
You don’t have to find the strength for every battle right now. You only need to find the energy for the current challenge that’s in front of you, right this second.
Remember to fight your battles the way you experience life: little by little and one day at a time.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.