The Thing About Scoliosis (and How to Deal with It)

I've noticed that a lot of my friends have been diagnosed with scoliosis, something that I also have—a not-so uncommon abnormality of the spine. But the way I see it, it is a poorly understood condition.

While Google can cite you several references to what scoliosis is like, how it is manifested, diagnosed, treated, prevented, and other trivial information about it, here, I'm going to write about my actual experience of being a scolioticsomething that I don't talk much about to others.




It all started way back in 2003 when I was at my ninang's birthday party who also happens to be a nurse. I was at my preteens, wearing a fitting blouse. My ninang noticed how my hips were unusually unbalanced (one was higher than the other), and she advised my parents to have me checked for scoliosis.

A few weeks after, we went to a doctor, and I was diagnosed with scoliosis. The doctor said it's idiopathic, meaning the cause is unknown. Mine is hereditary since I know a lot of my relatives, in the maternal side, who also suffer from the same condition.

Since the curvature was only 23 degrees in angle, the doctor said that we should wait until the angle doubles before we start treatment. My parents weren't convinced, so we had a second opinion in Cebu City. 

The second doctor advised me to wear a body brace while the angle is still manageable. I'm still young, so my bones are still pliablea good candidate for a brace treatment. And anyway, we couldn't afford to pay for a surgery for my spine.

So he gave a stat order to have me fitted for a milwaukee brace. We went to an occupational therapist, also in Cebu, who makes those kind of braces. He used a plaster of Paris to wrap around my torso, waited for a little while to have it dried, and then cut through it to have the mold removed from my body. (It was really awkward).


After 5 days and some final refitting, I finally sported my body brace. The first time I saw and actually wore it, I thought, "My god, this is hideous!" The brace was made out of plastic material and a light type of metal (probably aluminum), with leather padding on designated areas where the curvature needed to be corrected. The back part of the brace was adjustable with belts. So when I had to wear and remove it, I'd just fit it from the back and strap the brace up so that it could fit snugly around my torso.

The brace wrapped around my upper hips and stomach, with a hollowed part near the breasts, with metal supports around the neck so as to keep my posture always erect. I had to wear the brace 23/7, which gives me only an hour each day to remove itenough for me to take a bath and have my skin breathe out. At times, in my dire attempt to have my treatment hastened, I'd remove my brace less than an hour a day. So yes, I had to wear it even when I'm sleeping.



Wearing the brace had so many discomforts. Activity restrictions were expected, so I can't dance nor do curl-ups. So I had to give up PE and do an alternative activity (joining the choir, in my case). Anyway, for the discomforts, let me enumerate them with their corresponding solutions that I found out:

1. Prickly heat. My first battle to wearing the brace was the bout with having prickly heat. Having plastic wrapped around your body for 23 hours a day isn't good for the skin integrity because of the body heat being insulated within the plastic, plus my own body sweat. 

Solution: Wear a sando or thin sleeveless shirt before wearing the brace helps. That way, the plastic won't come in close contact to your skin. I also find using Fissan Prickly Heat Powder pretty effective in relieving itchiness.


2. Sleeping. Believe me, as much as walking around with a body brace is uncomfortable, lying in to sleep is 10 times more unsettling. 

Solution: It is uncomfortable sleeping on a very soft mattress since your body weight plus the brace will make you feel buried around the soft mass of foam you're lying on to. So I advise sleeping on a harder mattress. That way, you'll have better and sturdier support for your back. Sleeping with many pillows isn't very comfortable too since the brace goes up to your neck, making it hard to breathe. So I adivse sleeping on just one pillow, enough to support the head and neck.


3. Dressing up. I was a teenager that time, and the brace wasn't too conforming to fashion. With the added bulk, I had to wear clothes that were twice my usual size.

Solution: Since you can't do anything much about being unfashionable, consider your comfort more than trying to fit in with the rest of the crowd. You already look different with the brace, so try to fit in by being comfortable with what you look like.


4. The pain. Yes, wearing the brace is painful. The leather paddings were made to help maneuver the body to help correct the curvature. Thus, pressure is exerted to specific areas. For the duration of my treatment, I had blunt dark markings on the areas of my skin where the paddings were. Cold weather also adds to the pain. For some reasons, the coldness shoots up pain to the spine. Plus, whenever I get my period with accompanying dysmenorrhea, back pain also joins the party.

Solution: While you can take pain relievers, you might want to consider the welfare of your liver. You can manage the pain by distraction—just lying in bed, having a rest, doing some imagery, or watching TV. 


5. The stares and bullying. How many freaky people do you see wearing a weird thing around their necks? Well, close to none. So I get a lot of stares from strangers wherever I go. The only persons who do not get dumbstruck by my brace are my family, close friends, and classmates who see me every day. It was unsettling at first, getting a lot of attention than usual, but I learned to live with it. And yes, I get bullied. A lot. Being in a public school, many boys make fun of me, calling me rude names and treating me like I have a disability. That's something I never got over it, leading me to state of depression. I run to the girl's bathroom to cry after school, and only my best friend knows it. (Now the public knows, basically.) Being a teenager and not fitting in and being bullied were things that I couldn't handle well. 

Solution: Get someone to talk to about your feelings. It's best to vent it all out rather than keeping it all in.




Although wearing the brace had its share of advantages. For one, I always had a discount for any public transportation. If it wasn't because I was a student, it's  because the driver tought I'm a person with a disability (so I also had a privilege to sit in the front). And some people gave me a lot of special treatment, even in my classes where heavy physical activities were involved. And others were very nice to me too. (I take it more of pity than being empathetic; but nonetheless, I appreciate the stroke of kindness.)


After 2 years of going back and forth to Cebu four times a year to have myself X-rayed and having faithful devotion to the Senior Santo Niño, my scoliosis was finally corrected! Less than the expected duration of my treatment, though. All praises to the Lord! :)


Now, I'm 5 years free of not wearing my milwaukee brace. I kind of miss wearing it, but then, never in a million years would I ever want to wear it again. I haven't been back to my orthopedist in a while, and the best I've done to prevent any remissions (if it is even possible) is to keep proper body mechanics and good posture. I heard swimming is a good exercise to strengthen the back, and I might get around to doing it someday.


So I hope this post helps the many scoliotic people out there, maybe to help you guys deal with the condition, and perhaps empower you in some sort of way that there's always hope for everything :)



8 comments:

  1. My high school friend has scoliosis.. She was really pretty and tall and would have made a really good model.. Except that she had really low self-esteem bec. people kept teasing her about her back.. It's really sad :(

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  2. Hi mara :) yeah, i think it's mean how people could tease those who suffer from scoliosis, or any condition that could alter one's body image for that matter. Having to deal with the condition is enough to affect our self esteem :(

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  3. Many people says I have the good face, perfect height right for any pageant and competitions but I am a scoliotic person. It's really sad that other people sees us like we were strangers. But in my case, I handled it and even keep in for myself, family and few of our reletives knows about it. Not even my close friends knows. I've never been bullied about it before cos I was and I am a very good keeper. I do wear loose shirts and stuffs. But it was very sad to know that myself had this case. I am still praying for my cure and to all whose suffering scoliosis.

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  4. You’ve got some interesting points in this article. I would have never considered any of these if I didn’t come across this. Thanks!.
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  5. I like how you say that you would want to get a harder mattress when getting scoliosis treatment. It would seem that a firmer mattress would help support your weight and the weight of the brace. My daughter has scoliosis, so maybe we'll have to see if her mattress is the right firmness. http://www.cddenison.com/Foot-Braces-Knee-Braces-Ankle-Braces.html

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    Replies
    1. Hello, Gloria! I'm sorry to hear that your daughter also has scoliosis. I usually pick a mattress that's quilted and about 3-5 inches thick. You'll notice how it's firmer than other mattresses :)

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  6. Well, this is interesting. I want to thank you for this great article. Thanks for sharing this :)
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