Four Women. Four Stories of Living with Scoliosis
It’s okay if you saw the header and wondered what on earth that is. I only learnt of it a couple of years ago thanks to one of the ladies in this post. But for a condition that affects quite a large number of people it’s interesting how very little is known about it.
Simply put, Scoliosis is a situation where the spine twists and curves to the side. Thus, such persons could have a visibly curved spine, uneven shoulders and hips or even visible ribs sticking to one side.
It appears that due to a lack of awareness, it’s often not detected early making it tougher to manage. In some extreme cases in developing nations, it is seen as an aberration leading to such persons being discriminated against or even tortured.
As June is Scoliosis awareness month, four women share their stories - of diagnosis, life changes and generally living with scoliosis.
I realised I had scoliosis in 2014. I was about to go for my Masters in Cambridge and one of the visa requirements was to do an x-ray (to check for tuberculosis). It was supposed to be a pretty straightforward test. When it was time to get the results, they called everyone's name except mine. I was told the doctor would like to see me and we all know that's never a good sign. I started to panic thinking I had tuberculosis. It was perhaps the longest 5 minutes of my life. When I saw the doctor, she looked worried and asked: "how long have you had scoliosis?" I replied "I don't know what that is and I certainly don't have it". She then showed me my x-ray and explained what scoliosis meant to me. It was at that moment I understood why I had severe back pains since I was 10.
Because I found out when I was an adult, I didn't make any changes growing up. Right now though, I am very mindful about my posture. Whenever I take a picture, the first thing I look at is my back and shoulders because with scoliosis, you end up looking slant. Now, I go for monthly massages to soothe my back and that does wonders.
Most of the reactions have been really positive. People even offer to pay for my massages! On the flip side though, I remember an older lady telling me I had a nasty posture once but I just shrugged it off. I have learnt to live with this and we typically refer to ourselves as Scoli-Warriors because we don't want to victimise ourselves.
For a disease that affects so many people, there isn't enough publicity surrounding it so I do the little I can. I tell everyone who cares to listen about it and the signs to look out for in their children and partners especially in the month of June. However, I am very careful not to be defined by it. I am a woman who happens to have a c-shaped spine, not a c-shaped spine woman. There is a difference.
Early detection is key so it is important for parents to watch their children's posture early on. Unfortunately, scoliosis is one of those things that cannot be prevented so your best chance is to detect it early. The benefit of early detection is that you can get braces to prevent a further curvature of the spine, so the spine may only remain at a C and not an S.
And as a last word to everyone, watch your back. Literally!
- Tomilola is a lawyer by day and the Editor-in-chic of www.tomilola.com by night. When she isn’t working or blogging, she enjoys solving crossword puzzles and taking pictures of nature and buildings.
The exact details are a blur right now but I found out roughly 8 years ago. I simply remember looking at my shoulders and realizing they weren’t straight - and my left side folding! I was super skinny so, I knew it was not as a result of fat. One side of my rib was higher than the other and I just noticed the difference in my spine. I got scared because I didn’t know anything called scoliosis. I just thought something terrible had happened to my spine!
I have mild scoliosis. My curvature isn’t so bad and by God's grace, doesn’t require surgery. I do however have to maintain a healthy lifestyle, which for the most part means maintaining my weight as weight gain would worsen the curvature. I also had to change my bed. Yeah, a soft bed sounds nice and relaxing but means more back pain so I had to make necessary changes. On some really bad days, I have to sleep on the floor to ease the back pain - the hardest surface is amazing for my back.
I can’t forget trying to tell my dad that I needed to see a doctor of physiotherapist because there’s something different about my spine but he wasn’t having it! His typical response was: “There’s nothing there, I can’t see anything so we aren’t going to any hospital”. One day, I literally took off my clothes and bent down so he could see - and the next day, he took me to the hospital. With my friends, I just had to do a lot of explaining because they didn’t understand. But they were supportive.
I think a lot of people dealing with scoliosis go through a hard time mentally because it’s something physical, everyone knows there’s something different about you and that’s okay. I’d say, seek help, don’t focus on the bad and figure out how to deal with it. Read up on scoliosis as much as you can, early detection is the major key here. Scoliosis is not a result of bad posture; sometimes, it is genetic. Exercising is very important as well - you’d notice a massive difference in pain level and posture when you exercise regularly.
- Winifred is an ice cream lover, part creative, part sensitive being and part professional still figuring out the ideal career. Most days, she truly believes she's rare and live for it. She blogs at rareisbeautiful.co
About 12 years ago, I was in boarding house and was taking a shower when my classmate said my back was bent to one side and I should have it checked out. She had scoliosis at the time and was already wearing a brace so I guess that was what made her conscious and led her to detect my curved spine. A couple of hospital trips after, my mum and I were told I had Scoliosis. It was quite strange to us as it came out of nowhere. We later learnt 90% of scoliosis cases are idiopathic and they have no known cause.
Perhaps because I wore a brace, my curve is not visible, you have to take a closer look to notice, so I did not exactly get unnecessary stares from people growing up. However, when I had to wear my brace in secondary school I did not like it at all - it was quite uncomfortable and used to protrude from my school uniform, so I had a cute tartan sweater I wore every time to conceal it. I also do not remember my classmates being unkind or nasty to me - which is good.
I like to think there is something called having "an eye for scoliosis". If you don't know that it exists, chances are there could be someone beside you with a curved spine but you would not notice.
My friend Abimbola (same secondary school mate above) and I decided to set up an NGO to raise scoliosis awareness. We launched in 2016 and in the past two years we have had online and offline outreaches in schools, churches, seminars where we advocate for Scoliosis awareness. We also rely heavily on social media as it is one of the platforms through which we can effectively widen our reach. A very important part of managing Scoliosis is detecting it early. Then it can be managed by wearing a brace or physiotherapy. However when it gets extreme, there could be a need for surgery. We also have an online scoliosis support group where we share tips and advice. Some people go through phases where they are very conscious of their body shape cos they are perceived to be "different". So we try to build a community of love and strength for ScoliWarriors!
Generally, once you are aware of what scoliosis, you need to look out for people around you especially kids between the ages of 10-18 as that is when scoliosis is often discovered, during that growth spurt.
We had a scoliwarrior share her story with us recently. Her family had no idea how to manage her curved spine. In order to “treat” her, they took her to some place where they made incisions on her skin and poured chilli pepper on it. It is one of the most inhumane things I ever heard. Stories like this help to show that the work we do at Beyond A Curved Spine is important. More people need to #kNOWScoliosis and be observant - because early diagnosis leads to better outcomes.
- Abby is a Data Analytics Consultant and also likes to think of herself as a fierce protector of curved spines. She's fun sized and makes cute throw pillows.
I’ll never forget the day I found out about my curved spine. It was in 2004. I was 11 years old and in Year 9. This Saturday I was dressed for a party in a fitted, green-to-match skirt and top (my favourite "party” outfit at the time actually). I was about to step out and my sister goes “Huh? Bimbo what’s this on your back?” Everyone at home gathered behind me to find out was the fuss was about. I still went to my party but in a different, less fitting outfit. On Monday morning, my mum and I arrived in front of a doctor.
“Madam, your daughter has Scoliosis”. That was the first time we would ever hear of the “word”.
Until I got to university, growing up was pretty normal. In high school, I was crazy and carefree so I really didn’t care much, plus I wore a back brace through school so I think that kind of gave me some comfort. The back brace was horrible but I somewhat felt it would help my back - not quite sure it really did though.
When I got into Uni, that was when it dawned on me – I was different! Phew. My clothes won’t just fit. I always had a scarf around me or a jacket on. I was still the friendly, smiling girl on dreadlocks but inside of me, I felt somewhat abnormal, disadvantaged – like an outcast. Talk about some real self-esteem issues.
I try to live as normal as possible. I’m extra conscious of my posture though – I try to stand and sit straight all the time. I avoid standing, seating or walking for too long. I wouldn’t lift heavy things (I actually sometimes do but I pay for it! #BackPain). I’m not comfortable with swimming in public because people stare irritatingly (FYI, I can’t even swim so this is all in my head). I pretty much believe that I wear anything I want to (and I do) but there are days I’m not just ready for eyes and mouths on me; I try to own clothes that aren’t so body hugging.
Reactions are typically mixed: some people go “Oh Bimbo you are so strong and inspiring, it’s beautiful!” I get this reaction most often!
Then there are the people who ask a lot of questions“When you marry, when you get pregnant will it affect you?”
And speaking of getting married, I've had some interesting experiences. Sometime in my first year of Uni, I overheard a guy who was my closest friend at the time, say he couldn’t marry a person like me because “that one that isn't normal”.
But then in my 2nd year, I met a different kind of guy. He had been asking me out and one night he asked why my left hip was higher than the right. Unsure of where he was coming from, I said “huh. what you saying?” He replied: "I already checked. I know you have scoliosis and you shouldn’t be ashamed to say. It doesn’t change anything about you. You are beautiful and smart and…" *sobs*. Don’t ask me how long we dated for!
Finally, the people who either say it's not normal or God can heal you. I like the God can heal message though! Because I know and believe.
Prior to my being diagnosed, my sister had always complained I was developing a bad posture, she blamed it on my trying to pose with swag. Apparently, those were symptoms of scoliosis but she had no idea!
Early detection is the only way to defeat scoliosis and it’s important that everyone at least has an idea of what scoliosis is. This is possible when we first become aware and then we make the effort to educate someone else. So do you #kNOwScoliosis and its very simple and subtle symptoms? One child’s entire life may just be depending on the information you’ll find.
- Abimbola is co-founder and a scoliosis awareness advocate at Beyond A Curved Spine. She is currently single and in a situationship with Nigeria. Travelling, touring, acting and making someone’s day top her hobby-list. She also doubles as a lazy-writer at onepowerwoman.com
Do you have any experience with scoliosis? Tell us.