June is #ScoliosisAwarenessMonth and I felt it was necessary to be intentional about it this year.
I don’t think I’ve ever shared that I have scoliosis with the internet. No reason, I didn’t feel it was necessary.
I do have scoliosis- Mild scoliosis in simpler terms lol. If I’m being honest, I’m super grateful for mine because it isn’t so visible, the pain level is amazing compared to others, I don’t need surgery and its pretty manageable so that’s amazing.
If you’ve never heard about scoliosis, it is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty. While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown.
Knowing that I deal with the mild version ,prompted me to ask other people dealing with scoliosis to share their experiences. I hope you guys learn a thing or two!
Coping with scoliosis wasn’t extremely terrible, I had to be conscious of how I walked so people wouldn’t notice I was bending to one side..standing for too long, sitting for too long, lying down in the same position for too long, carrying heavy things have been my major challenges.Mentally I wasn’t really affected ,only that I never let wanted to hang out because I’d be forced to wear my brace anywhere I was going.
In my opinion, scoliosis is misconceived to be caused by bad posture and I would say 50% of Nigerians are not aware of scoliosis.
Scoliosis is not the end of the world. There are a lot of ways to be happy and comfortable in your own style..come out there and be different!
The journey so far has been interesting and eventful. I initially wasn’t sure what to expect but the realities of having to always wear a brace, dealing with the heat, sleeping in very specific positions, getting weird questions and all sorts of funny reactions from people, painfully set in and were quite a lot for me to take in as a teenager. At some point I decided to stop using my first brace and this was the beginning of severe back pains which people around couldn’t relate to. ‘Oh you are too young to have back pain’, ‘you are a woman’, ‘you haven’t even had a child yet’ and so on. I remember in my undergrad days it was hard for me to do things as basic as sitting or even standing without complaining of back aches, which people could not just understand and would call me an attention-seeker, lazy or a sickly person. Some of these experiences began to affect me inwardly and my self-esteem began to plummet. I began to tag myself as limited and it took quite a while to get myself back on track and just accept my difference and take life for what it really was. I had scoliosis and I had to deal with it to the best of my ability. I had to realize that I could live the best life in spite of scoliosis. So I started taking my exercises more seriously, wearing my new braces as consistently as possible and I had to just keep pushing the limits of what my body could do and it has worked out so far. Many thanks to BACS!
“One other thing that has helped that I have drawn strength from other people who are living there best lives with scoliosis. I got a lot of this from BACS! (@Beyondacurvedspine).”
As far as misconceptions go, I think one major problem in Nigeria is that a significant amount of people don’t even know that scoliosis is a thing. The few people that I have had discussions with about scoliosis, who appeared to have an idea, don’t know the full extent of what the condition is. Many think it is a disease, which is not – it’s just a condition. I’ve had people confuse scoliosis with sclerosis, which are two entirely different conditions. And when you begin to explain or describe what scoliosis is some people begin to ask questions that prove that they still do not understand what it really is. They say things like “did you fall?” or “did you have an accident?” or what happened you know? As if it could have been prevented… really nothing happened! It is a n idiopathic condition in most cases – nothing known caused it.
To Warriors out there, I’ll just say believe that you can live your best life possible. I have this sign in my room which says “you have been given this life because you are strong enough to live it” and basically that has in many ways motivated me. I think we should all always remember and believe this. One other thing that has helped that I have drawn strength from other people who are living there best lives with scoliosis. I got a lot of this from BACS! (@Beyondacurvedspine).
Okonkwor Christian Oyor
It has been tough, my parents, especially my mum had a hard time accepting it. I struggle with it every day. At first, I wore big shirts to hide it, and I would look at my body in the mirror and it would seem strange to me. I never considered surgery…maybe when I am much older. I am still not completely comfortable with the fact that I have scoliosis. Sometimes when I wear fitting clothes, I feel uncomfortable, like people are staring at me and wondering what is wrong with me. I am definitely not confident enough to be shirtless in public places like the beach, or a swimming pool. However, I have no issues anymore with telling someone who stares too much or asks me what is wrong with my back what scoliosis is and all. I wore a Boston brace for about a year, that was in 100l, it was torture for me, and I hated every moment of it. I eventually stopped wearing the brace, and currently I try to exercise, and tried physiotherapy for a while. As a medical student, it was difficult for me especially during my clinical rotations, sometimes my back muscles would rebel against the prolonged standing and I would have this crazy back pain that could only be relieved by lying down, I got used to the pain over time as I hate taking drugs…An irony, I know.
“A lot of people think it is spiritual”
Mental Health: Well, let’s say it has affected my body image. Like I said, I am still struggling to completely embrace my body, the way it is now and all. It contributed to my low self-esteem back then, but that is behind me now, it is just so difficult sometimes, cos I want to wear something, but I can’t because it shows my curve and my winged scapula. Makes me feel vulnerable.
Misconception: A lot of people think it is spiritual, especially my type of scoliosis. I was not born like that you see, mine happened during puberty…Idiopathic scoliosis is seen as a spiritual attack, and that is just annoying to me!
Awareness: No. before I was diagnosed and did a lot of reading, I had never heard about it. Even among doctors, it is known of course, but it is not so popular, which is mostly due to the fact that scoliosis is not a killer disease per se, and it has a low prevalence. A lot of Nigerians have never heard of scoliosis and don’t know what it is.
Advice: Don’t be ashamed of your body the way it is now, embrace it and own it. People will like you for you, and not for your curve. Never forget that, I forget it sometimes too. Especially in today’s world were the image of the picture perfect guy or girl is all over the media, and your body reminds you about how much you are not that image.
I discovered I had scoliosis when I was 13
It was discovered by my Grandma, but I never knew how big a deal it was until I got a Milwaukee brace 2 years later. It pretty much crashed my self-esteem as a teenager. I remember the first weekend I had my braces on, my cousins came over and then Inspector Gadget was trending. That became my first scoliosis related nickname. I was too ashamed to go out, but overtime I kind of embraced my situation and had a comical view towards it.
It was worse for my parents, especially my Mom. I think the incidence has kind of defined her in so many ways. At first, the doctors said it was idiopathic (in line with the general consensus in the medical field), but amazingly my Dad, my brother and one of sisters have scoliosis. Because we didn’t have the facts that scoliosis could be hereditary, or that there were some viable treatment options apart from surgery, my brother’s curve got quite severe. At some point in my life, I just became indifferent, which only made matters worse, as I think the curve got worse and my health suffered for it.
“It was worse for my parents, especially my Mom. I think the incidence has kind of defined her in so many ways.”
I haven’t done surgery because I will rather believe that there is another way than to go face that risk. When I was first diagnosed, there were discussions around the risk of possible paralysis if I had surgery, especially in old age. That freaked my parents out and I definitely wasn’t taking that route. I later began doing physical therapy through a traditionally trained therapist. It helped, but I feel that if he had involved a bit of science to his trade, he would have had more success with my treatment. I have discovered other ways of managing scoliosis (e.g. Schroth Method, Chiropractic Therapy, targeted exercises etc), but it is been a difficult journey because these centers are outside Nigeria and there are very few or no centers where they can manage scoliosis effectively in Nigeria at an affordable cost. The general consensus in the medical field is that surgery is the only way once the curve is above 25 degrees, but this thinking is changing in other countries, especially for younger patients (at least based on my research and some medical trips I have made). I’m still all over the place and I cannot say I have handled my scoliosis to the best of my ability.
My greatest pain is from the realization of how poor health care and health care related research is in Nigeria. The body of knowledge on scoliosis here has been my biggest setback. The doctors are actually trying their best, but without adequate funding, the medical field cannot give its best to the average Nigerian and health issues are like snow-balls, they keep getting bigger and bigger the more you do not address them. But I guess I am on my journey and things can only get better.
It definitely affected my self esteem for a long period of time and kind of affected my willingness to do certain things. Also, I think I kind of can easily become indifferent and passive about rather serious things.
That scoliosis is caused by poor posture or carrying heavy things wrongly. This is not entirely true, carrying heavy objects might aggravate the curve, but there are many causes. Apart from congenital scoliosis and infections of the spine (usually due to cancer), there are many causes of scoliosis with some tending towards neuro-muscular issues.
My advice is, do as much exercise as your body will allow you regularly. I think that’s something I didn’t do in my younger days. With the right exercise and diet one can cope with scoliosis better.
I’m definitely with “anonymous” on doing as much a=exercise as your body allows! Something safe for your back but effective to reduce the pain. Living with scoliosis is a journey but it can be a beautiful one!
What do you guys think? I definitely Loved this! My first time interviewing people on the blog!
PS: Shoutout to Beyond a Curved Spine@beyondacurvedspine on IG. They are a non governmental organization creating awareness for scoliosis!
Did you know about scoliosis before reading this?
Till the next post,
Stay Rare! x