Today, through this article, I want to commemorate World Lupus Day. World Lupus Day is “celebrated” yearly on May 10th to raise awareness about Lupus. By sharing my own experience, I’d like to raise awareness, increase understanding, and provide anyone who may be interested, with some tips on having to create a new normal- which might be a reality for most of us now in having to create a new normal during a global health crisis.
Below, I’ve outlined what has helped me as a person who has been diagnosed with Systemic lupus erythematosus (SLE).
What is Lupus? “Lupus is defined as a complex autoimmune disorder that can affect any organ system in the body. Lupus develops when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many body systems — including your heart, kidneys, joints, skin, blood cells, brain, and lungs. Lupus is a chronic disease that does not have a cure at this time.”
From the definition and onset of the disease itself, three main facts solidified themselves in my head:
Lupus can affect any organ in the body.
Lupus develops when your immune system attacks your own tissue and organs.
It is a chronic disease that doesn’t have a cure.
Although I had read about Lupus and understood it from an intellectual perspective, I kept telling myself: “I’m going to recover”. I kept asking doctors for an average time until full recovery, I wanted to “go back to normal”. Doctors never answered the question the way I was expecting them to, so I decided it was best to look further and get in touch with other people who had been diagnosed with Lupus. After reaching out and having multiple conversations with Lupus patients, I finally realized there is no going back to normal. I finally got to understand that I had to build up my new normal.
Shortly after I was diagnosed, I began taking corticosteroids and other medications. The side effects kicked-in quickly. My face and stomach swole; I couldn’t sleep much at night as my heart was beating extremely fast, and I was sweating buckets. Mood swings, depression, fatigue… The term I used to describe it was me being in the “zombie” state. While the zombie state was challenging, it allowed me to stop, and question what my beliefs, values, and priorities were in life. It made me realize that before the new normal would set in, I had to let go.
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Question your beliefs
Whenever I was feeling physically tired, it dawned on me how much I’ve demanded from my body over the years. Having 12 to 15 hour-long days was perfectly normal to me; I was a student-athlete, so in school and university I was studying and training every day. In fact, I began training for sports every day since I was 9 years old. But what was going through my mind? I was always pursuing a clear objective, winning a tournament, doing my best in the Colombian national soccer team, earning a scholarship.
When I eventually left soccer, it was still the same mindset, but mostly focussed on work. I started as a Voice Actors Agent for VoiceBunny, and I always wanted to start my own business so I jumped right into every challenge I was presented with. By the time my diagnose came in early 2019, I was the CEO of Bunny Studio whilst pursuing a master’s in Gestalt Psychology. So, in fact, I did meet my initial objective and learned as much as possible, but after being diagnosed, I came to realize that I was extremely exhausted.
I never took the time to appreciate what I had, because I was always looking forward to the next goal. Even more shocking, was spending my time demanding my brain and body to keep up with said goals, and never made room for taking care of myself. Deep down, I thought people around me liked and loved me because of what I did.
Only when I stopped working so hard towards my next goal, due to Lupus, and received love from people around me, I was able to internalize that people loved me because of who I am and not for what I do. That was just one example, but I did find myself thinking things like “you have to be strong”, or “you can’t be vulnerable”. That is not true for me anymore.
Once you question your beliefs about yourself, it is important to decide whether you believe it or not, and if you want to keep carrying those beliefs moving forward.
Question your priorities
When we go through important life events, we tend to wind down back to essentials. Being diagnosed with Lupus was definitely an important life event for me. It allowed me to review the priorities around me. I used to put other people’s needs first, and leave my own personal wishes, desires, and priorities last. So I decided that my physical, mental, and spiritual health should become my top priorities. It was important to establish my new priorities, but even more so to openly talk about them with my family, my partner, and my boss (in my case the board of directors of Bunny Studio). This also taught me that I don’t have to figure out everything right away. Instead, I worked with all of them in different ways to build my new normal based on my new needs and priorities.
Allow yourself to feel
I usually didn’t have the time or the need to stop and feel. Feel my body, my emotions. In fact, my body gave me a lot of signs of tiredness and stress, but I was not paying attention to them. When I got diagnosed, it was important for me to allow myself to feel sad. Usually, the first reaction I had was to get distracted because “you’re not supposed to cry”. But a mix of me challenging my old beliefs, medicine that lead me into a depression, and physical tiredness allowed me to finally surrender. To surrender and feel ashamed for not putting myself first, for not taking good care of myself. The grief of losing that invulnerable and idealized idea of myself, to surrender to a new me who feels pain, weakness, emotions, and feels scared about the changes that this new normal could bring. Surrender to Lupus itself and open up to its message. From the conversations I had with people diagnosed with Lupus, all of them mentioned that allowing themselves to surrender was the key to later transformation.
Giving up control
Lupus has taught me to give up control. I used to think I could control everything: my schedule, my mood, my body, my emotions. Lupus brings a lot of uncertainty; it can affect different organs in your body, so you have to go in for constant check-ups. You don’t really know if it is going to react well to corticosteroids or how long the process is going to take, you don’t really know when the next flare-up will happen or exactly why. You don’t know whether you are going to have a “good” or “bad” day tomorrow. If you are going to have enough energy to complete what you planned for.
It was extremely frustrating for me to go from planning everything to having so much uncertainty. My brain was the leader and organizer of my entire life, and it turns out “she” was very selfish, “she” never asked if the body could manage all the tasks. Lupus changed that, and now my body is the one who leads; through the entire day, I try to be connected with my body and trust her over my brain. Further on, I will explain how I set up expectations and helped those around me in understanding and being prepared for it.
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Maria Alejandra AKA Male is the People Operations Coordinator at Bunny Studio. She’s a Psychologist major specialized in Human Talent Management, she’s worked in the Human Resource field for the last 4 years. During her career in Bunny Studio, she has been able to help grow the company and doubled its team size in less than a year. She’s passionate about finding unique talent worldwide and giving them their best remote work experience.