“I was out with friends at a local Mexican restaurant when we sat down to snack on chips while waiting for our food to arrive. I sat there trying to participate in conversation and eat but I could hardly bring anything to my lips as I was so nauseous. After excusing myself, I said wasn’t feeling well and drove straight home. I was 17 at the time and that was my last social event for months. It was my senior year in high school and in the months leading up to that night I was constantly missing school. I would feel flu-like one day and then fine the next. For the life of me, I couldn’t figure out what was going on.
After that night at the restaurant, everything changed. I didn’t have another ‘healthy’ day for a long, long time. As I lay there in bed, too sick to move, my parents and I knew something was wrong and this wasn’t a typical bug. My mom went on a frantic hunt to find a doctor who could provide us insight to what was going on. When she called her own doctor for a referral he pointed us in the direction of my current rheumatologist. I was diagnosed with Lupus shortly after and my world crumbled around me.
I was supposed to be getting ready to go off to college with friends and I suddenly found myself unable to get out of bed. Extreme nausea was unrelenting for months and drove me absolutely crazy. That was my biggest challenge for a long time. I remember explaining to my doctors that I felt like I was paralyzed with nausea; moving, talking, everything made it worse. My white blood count was basically nonexistent and I was talking upward of 30 pills a day trying to get my immune system to calm down and get my body back on track. A walk around the block per day was all I could muster. And by the time I got back to my bed I would be shaking. It was a horrible feeling to know only a few months ago I was able to work out for hours unfazed and was now barely able to leave the house. I felt incredibly deflated and powerless to my situation; I was so consumed by how ill I felt, I couldn’t give my energy to anything else.
After months and months of what felt like my version of hell, I started to improve and slowly regain aspects of my previous life. I didn’t quite feel like me but I was able to get out of the house and that was a win.
Around this time, my sister Kate began having similar symptoms to what I experienced and was shortly after diagnosed with Lupus as well as something called POTS (Postural Orthostatic Tachycardic Syndrome POTS). POTS means your blood doesn’t circulate well, so when you stand it pools to the bottom of your body. As a result, your heart will race and your blood pressure will plummet, causing you to faint.
Although Kate looked like a normal healthy young adult, she could hardly get around without a wheelchair. She consumed mass amounts of salt in hopes to hold on to more fluid and increase her blood volume (normal POTS protocol). People would say insensitive things when she would use a motorized wheelchair to go around places like Target but little did they know she just sat in the car for 10 minutes trying to muster the strength to make it across the parking lot and into the store. I understand there is preconceived notion you should be older or have a visible disability to use such devices or have a handicapped parking pass but it’s still shocking to have people roll their eyes at you or say ‘you don’t need that’ or ‘faker’ as they walk by.
Over the years, my autoimmune side of things calmed down as I got on the right medications, but my autonomic system went a bit haywire from the trauma my body had been through. I remember one morning almost crawling to bathroom, I couldn’t stand up without blacking out. My mom brought me to the doctor and when they gave me the sheet to sign my name and list my medications I waved them away; I felt like I was drugged and holding a pen and concentrating was too much for me at that moment. When the doctor took my blood pressure, it was 60/40 and he said it’s a miracle I was even sitting upright. After a few tests, what did you know. I too was diagnosed with POTS. That’s kind of the way it goes with chronic conditions; more often than not, you don’t just have one.
Kate and I are currently each diagnosed with Lupus, POTS, Mast Cell Activation Disorder (MCAD) and Elhers Danlos Syndrome (EDS). The main things we deal with from day to day are the POTS symptoms and EDS pain. Anything and everything affects POTS, so much so that we are constantly trying to strike the right balance and keep our symptoms at bay. Something as simple as walking too much or not drinking quite enough has resulted in days in bed afterwards, and this aspect can be very frustrating.
Having my sister by at my side during this weird roller coaster has meant everything to me. Obviously you never want someone you love to be in pain or feel unwell, but it’s hard to understand certain aspects of being chronically ill if you’re not going through it yourself. Having her understand it from her own first hand experience has been beyond comforting.
Recently this past summer we got to travel to Paris and while we loved the adventure it proved difficult for us health wise. One of the spots we wanted to visit was the Arc De Triomphe which basically involves climbing a seemingly never ending cylinder of stairs to get to the top where you then have a beautiful view of the city and Eiffel Tower. For someone with POTS, stairs are an incredibly difficult obstacle so you can imagine how intimidating this particular monument was to us. But we were determined to get to the top and despite tons of breaks while others passed us we constantly reassured and encouraged each other until we made it to the top, which felt like a massive accomplishment. Others may have looked at us up there and not thought twice about it, but we knew what exactly went into that journey and all the pain and strength it took for us to make it to the top. Having someone who understands the silent struggles is validating but more importantly, it makes it so you’re not alone in what otherwise, could be a very isolating experience. She is my best friend and we have gained an even stronger bond while going through this together.”
This story was submitted to Love What Matters by sisters Em and Kate of San Diego, CA. You can follow their journey on Instagram here and their website here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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