The Scoliosis Life (@scolilife) is a Twitter account with more than 3,000 followers. The account’s anonymous owner has lived with scoliosis for the past 8 years, and they use Twitter to share their experiences along with a plethora of useful life tips for people with curved spines.
The person behind @scolilife very kindly agreed to answer a few questions for the Scoliosis SOS blog – read on to find out all about their condition, their journey, and their advice for fellow scoliosis patients:
First of all, please tell us a little about yourself – where in the world do you live, and when were you diagnosed with scoliosis?
I am from Canada! I was diagnosed by my family doctor at my yearly physical when I was 12 years old. My doctor knew to check for scoliosis because it’s genetic and it runs in my family.
How severe was your spinal curvature?
My curves progressed rather quickly. I was diagnosed with an ‘S’ curve, and both curves initially measured in the mid 30s. By the time I had surgery 5 years later, the curves had reached the high 80s.
What symptoms did you experience, and how much did they impact your day-to-day life?
Before surgery, I was experiencing shortness of breath, heart palpitations, and chronic pain. My ribs became constricted due to my curves, and my organs were so out of place that I could literally push them around. Even walking up a flight of stairs would leave me out of breath. I was hesitant to go out with friends because I never knew when a symptom would strike. There were many times in school where I would lose my breath because a slight turn caused my ribs to hit my lungs.
What treatments have you undergone since you were diagnosed?
When first diagnosed, I wore the SpineCor brace, but my curves continued to progress rapidly and I was put on the waiting list for surgery. To ensure my curves did not increase by huge increments, I was put into a Chêneau brace for the last year before surgery. I underwent spinal fusion surgery in March 2014.
How well did these treatments work for you?
For me personally, the SpineCor brace was not effective. Still, while I do have some regrets about this treatment option, the psychical and mental struggles I experienced while in this brace allowed me to grow and learn more about myself and my inner strength.
I found the Chêneau to be much more comfortable and I was pretty satisfied with it. This brace was not meant to stop my curves – by that point in my journey, my family and my doctors knew that my curves were going to increase and that surgery was inevitable. This brace was intended to keep my curves from increasing at extremely large increments while I waited for surgery, and to keep me as comfortable as possible in the meantime.
I am very open on my Twitter account about my surgery experience. My recovery was unusually long and difficult, but it has made me much stronger. Despite my long recovery, I am extremely pleased with my results. My scar looks amazing and has faded a lot since the operation. I am now much more active and ultimately more positive when it comes to my body image.
You refer to yourself in your Twitter bio as a ‘spoonie’ – have you found Christine Miserandino’s spoon theory useful when describing to other people what it’s like to live with a condition like scoliosis?
For a long time, I struggled with communicating to friends and family just how much my scoliosis affected me. Sometimes my scoliosis presents itself like an invisible illness, and people do not always understand how much a curved spine can impact one’s life. The spoon theory gave me something physical for friends and family to engage with in order to truly understand my life. This theory is adaptable, people of all ages can understand it, and it doesn’t matter if the person you’re talking to doesn’t have any knowledge of chronic illness.
It also allowed me to connect to a much larger population. I felt alone before, and even now my issues sometimes transcend those of the scoliosis community. The spoon theory and calling myself a ‘spoonie’ allowed me to find connections in a greater community and to help others who may have felt lost themselves.
Are there any under-publicised effects of scoliosis that you wish people spoke about more often?
I think the mental health issues that come with surgery are a large area of concern. Since my surgery, I suffer from anxiety and PTSD, and that’s been hard to discuss. I am still not open about it with friends and family. I think it’s important to let others know that feeling this way is normal, and that it’s okay to feel like that. But it is also important to let people know that there is no shame in getting help, and no matter how small you may feel your mental health is, someone wants to listen and help you. This is a lesson I am still trying to live by and follow.
I would also like to see more discussion on pain. Too often, surgeons write off pain as something that’s all in your head. My own surgeon referred me to a psychiatrist because he thought I was making up my chronic pain. I was 3 weeks post-op at the time. I think if more people shared their stories about pain, and if we increased the amount of research in this field, more medical professionals would change their views and increase and improve patient care. I think it also ties into mental health – by saying, ‘yes, scoliosis can cause pain’, we make people feel like their experiences are valid and let them know that they can get the treatment they need.
I think there is a lot of room for growth, and I hope my Twitter account and my transparent views on pain and mental health help my followers feel accepted and validated.
How have your family helped you to deal with your spinal curve?
I am so lucky to come from a family that values emotions and talking about things openly. My mom has come to every appointment and is always there to debrief and talk with me openly about how I am feeling. My parents helped me stay grounded – when I was overwhelmed with emotions, they helped me sort everything out. They were not afraid to voice their opinions on treatment options, but they also let me know that it was my body and therefore I had the final say on everything.
My older sister played by far the most influential role. She was away at university on the other side of the country while I was in the midst of my scoliosis journey. She was there for me after every appointment and could always cheer me up. To my sister, who is probably reading this, thank you!
What advice would you give to people – parents, siblings, partners, friends, housemates – who are close to a scoliosis patient and want to support them?
The best advice I can give is to talk about it openly. Sometimes, we want to talk about our scoliosis and our experiences, but we might not be sure how. If you know we were at an appointment, or if you notice that we have maybe been acting a bit different than normal, it is okay to ask us how things went or if we need to talk. It shows that you’ve paid attention and you are trying your best to understand our journey.
It is also important to be understanding of our journey. Sometimes, we might have to say an activity causes us pain or discomfort, or maybe you said something that hurt our feelings or belittled our experiences. By telling you this, we don’t mean to blame you or to make you feel bad for your actions, but to simply enlighten you so we can avoid this issue in the future. If someone you know with scoliosis says, ‘I don’t like going on roller coasters because it hurts my back, maybe we can try going to the movies more often’, see this as an opportunity to do something new together. It takes a lot of courage for us to feel comfortable to voice these concerns with friends and family, and we do so because we genuinely love spending time with you, but we sometimes need to understand each other’s needs to minimise discomfort.
Finally, what’s the first thing you would say to a young person who has just been diagnosed with scoliosis?
As cheesy as it sounds, things get better. When I was diagnosed, I thought my life was over. It was the biggest deal and no matter what, everything seemed like bad news or just another complication to add to my growing list. But soon enough, you adjust to the brace. The X-rays become fun. The appointments become bonding time with your family and a great excuse to miss that class you’ve been dreading. Your scoliosis becomes a point of pride rather than disappointment, and you become stronger and more independent because of it.
And soon enough, you will forget what the brace felt like. Your scar will fade, the IV marks will disappear. The pain will ease and experiences will become memories. No journey is the same, and that’s the most amazing and precious thing about this condition – you are unique and special and that curved spine or titanium spine can become your greatest weakness or your greatest accomplishment. Only you can decide how you will let it affect you.
Be sure to follow @scolilife on Twitter for more scoliosis advice and experiences.