On social media, I have spoken about what it’s like being the twin with chronic illnesses. Although, there is a part of my life that until now has remained unwritten.
My first chronic condition was not POTS or MCAS, but Scoliosis and I was fortunate enough to have someone by my side the entire time. Since June is Scoliosis Awareness Month as well as my identical twin and I’s birthday month, now seemed like the appropriate time to share our story.
During 7th grade in 2011, my family and I were having fun in the sun on spring break and my parents noticed that my identical twin and I’s hips and shoulders were terribly uneven. Not long after we got back, we learned that we both had severe scoliosis with curves that were likely to increase rapidly. Scoliosis is a musculoskeletal disorder in which there is a sideways curvature of the spine.
Up until that moment, we were extremely privileged to not have faced any major adversity in our lives. After meeting with several doctors, we found that there are very few treatment options for adolescent idiopathic scoliosis besides full-time bracing or a spinal fusion. Neither option seemed ideal, especially for two extremely active adolescents. Our parents are extremely strongminded and refused to accept any of the presented treatment options. Through their perseverance and determination, my parents found an alternative treatment plan although it would only work for one of us.
My twin sister Anna and I are identical so one would think that we have many physical similarities. We do, except in this circumstance; the severity of our spinal curves.
The other option that my parents discovered, although unconventional and not yet FDA approved gave only one of us the best chance of preserving our back flexibility and a greater possibility of going back to our normal activities without any restrictions. The alternative to a spinal fusion is called Vertebral Body Tethering (VBT). I ended up being the “lucky” one who qualified for VBT. Anna had a twenty-degree greater curve than I and had no choice but to receive the traditional spinal fusion.
It has been seven years and I still cannot help but feel guilty that I was eligible to receive the surgery and she was not. I still would do anything to have the opportunity to go back and time and switch places with her.
The journey from finding out that we needed surgery, having surgery, recovering from surgery, to learning how to adapt to our new normal was lengthy and difficult. The experience not only affected my twin and I physically but was emotionally demanding for everyone in our family. The first challenge my parents faced was deciding if I should get the traditional or experimental surgery. Even though our parents are both physicians, they are also parents who want to protect their children from harm and risk.
Our surgeries took place at Shriner’s Children’s Hospital in Philadelphia, a three-hour train ride from our home in Virginia. Once there, the staff including, the nurses and doctors, could not have been kinder or more welcoming. Both surgeries went well and after another week we were allowed to go home to Virginia.
When we got home we were surprised to see our towns support presented through cards from our classmates and teachers, gifts from our friends and family, food from our synagogue, and a homemade blanket made by our soccer team. I never realized how large and supportive our external environment is.
The following four weeks, in which we spent much of our time at home, were extremely isolating. Anna and I both did not want to see our friends as we did not want them to feel sorry for us and we were determined to keep our surgeries as much of a secret as possible. Even though that was our decision, that did not stop our friends and family from checking in on us.
Throughout our month of “isolation,” Anna and I became much closer than we were before. We are each other’s best friend and we were going through an extremely similar journey.
During the four weeks we missed of school as well as the month after, I was in a back-brace for twenty-three hours a day which led to a multitude of problems. I refused to leave the house out of embarrassment from wearing the brace as well as refused to eat in fear of gaining weight since I was not allowed to workout out for the next six months.
I continued to suffer in silence, not even telling my twin until our post-op appointment revealed that I had lost a ridiculous amount of weight. With therapy, I was still extremely timid at meal time as well as self-conscious, but since I did gain weight, I could ease back into my favorite sports of running and playing soccer.
Although I struggled with disordered eating and anxiety, which was interrelated with the surgery, it taught me how to be resilient which has influenced my life in a positive way. I learned that interdependence can be impactful, especially when going through a medical trauma. I consider myself to be more in tune with other people’s emotions because I can empathize and understand how hard it is to be vulnerable. I personally believe that chronically ill individuals oftentimes know their strengths and weaknesses better than anyone else, and are, therefore, amazing advocates, not just for themselves but for others as well.
I embrace being an advocate for both mental health and scoliosis because it has revealed how positive support can be a valuable protective factor during stressful life events. My twin and I will always have scars and slight curves that stand as reminders of our strenuous journey, but as my mom always reminds us, we are bent, not broken and that motivates us to continue to share our story.
Interested in reading about what it’s like being the twin with chronic illnesses check out my published story on The Mighty. https://themighty.com/2020/02/identical-twin-chronic-illness/