Are you a teen with scoliosis, or the parent of a teen with scoliosis? Good news…
you’ve come to the right place!
TWiSTED: Back Collage
Choreography: Martha Carter
Visuals: jamie griffiths
This collage, celebrating spine flexibility, was created as the opening video sequence for a performance piece called TWiSTED. Performed by Martha Carter, this piece recounted her struggle as a dance artist with a twisted spine, and ultimately lead to the creation of the TWISTED OUTREACH PROJECT.
Our founder, Martha Carter, and many of the teachers and affiliates that work with the TWiSTED Outreach Project for Back Care and Scoliosis (TOPS) first learned of their scoliosis when they were teenagers. They understand that it is confusing to be surprised by this condition, and deal with the stress, fear and pain that can come with a physical issue. Parents want to help, but it is very difficult for teenagers to figure out what this means for them—for their health and their future.
In case it's helpful, here are thoughts on some of the questions you might have at this time:
Everyone’s scoliosis progresses differently, so every body looks and feels different. Sometimes the scoliosis curve progresses quickly, sometimes slowly, and each person’s curve has a unique pattern. Often people experience some aching in their back, or other body issues related to the twisted spine such as headaches, indigestion, or joint fatigue.
Occasionally, the severity and location of the curve can compress the rib cage, causing lung and heart problems; however, scoliosis treatments, both medical and alternative, aim to prevent the curve from reaching such an extent.
The most common version of scoliosis is called Adolescent “Idiopathic” Scoliosis (AIS) because the medical world has not yet discovered why people get scoliosis. Idiopathic means “no known cause.” There are many theories, but there is no definitive answer. Sometimes it runs in families and sometimes it doesn’t. It occurs in all cultures around the world to all different kinds of people. One thing is for sure, it is nobody’s fault. You did not do something wrong.
Often, one shoulder or hip will look higher than the other, but most people don’t notice it. Usually the asymmetry isn’t very noticeable when someone is looking at you from the front, but it might be more apparent from the back. Sometimes the uneven shoulders or hips will cause clothing to hang in a slightly crooked way.
You can do whatever feels okay for you. For most people with scoliosis, sports such as hiking, swimming, biking, rowing and skiing are very possible and even strengthening for the spine. Sports that cause twisting or impact on the spine such as racquet sports, snowboarding and jogging can be more challenging.
When undertaking any physical activities, it’s very important to listen to and honour what your body is telling you. If an activity is causing you pain, it’s a good idea to back off, and perhaps seek the input of a coach or bodywork professional that can help guide you. Remember, there are plenty of sports, and movement practices out there. If one doesn’t work for you, rest assured that another one will.
Everyone is different. There are many people with scoliosis who never experience pain. And for those who do get pain, the level of pain is not always related to the size of the curve. Some people who have very small curves will experience more pain that people with large curves. It is very unpredictable.
Another thing to keep in mind is that the levels of pain can change. Like many conditions, people may find that their scoliosis hurts more as they get older, especially if they sit a lot for studying or for work. Also, age causes everyone to experience some compression in their body, so people with scoliosis may feel this even more. The good news is, most people find that if they stay active and seek supportive care when necessary, they can manage their back pain.
Trouble walking and standing only occurs in the most extreme cases of scoliosis. In such extreme cases, medical and supportive therapies will be vital, particularly during the critical growth period of your teenage years. In all cases, developing a lifelong movement and strength practice will aid and support your mobility.
Everyone’s scoliosis progresses differently. Sometimes curves get worse, and sometimes they don’t. There is no doubt that the stronger and fitter the body, the less likely that the curvature will progress dramatically with age. That said, almost everyone, scoliosis patient or not, experiences some kind of spinal compression with age.
In non-scoliosis patients, the degeneration of discs and spinal joints can occasionally result in the development of adult degenerative scoliosis. For scoliosis patients, arthritis of the spine may develop in later years, but again, a lifetime habit of strength training and mobility can help to prevent or mitigate this.
Both bracing and surgery are most commonly applied during the teenage years when the scoliosis is first diagnosed and while the teenager is still growing. Occasionally, bracing and surgery are used later in life. With or without bracing and surgery, it is highly recommended that everyone with scoliosis and back issues continue gentle exercises to maintain their back strength throughout their lifetime.
In most cases, it is important to have a good chair and desk. The height of these should be adjusted so that you can sit straight and comfortably while working. It is also important to stand up and move at least once an hour to stretch your spine and keep you body mobile.
If your scoliosis is mild, or it doesn’t bother you, then it is not necessary to mention anything to anyone. However, if you want to let others know about your condition, it is important to learn how to talk about it in a simple way that informs others and helps them understand your needs. In most cases, it is not necessary to get into details right away. For example, you can say, “I want to let you know that sometimes I have back pain due to a spine issue, so it would be great if I could have an adjustable desk chair.”
In general, as long as you stay strong and fit, scoliosis isn’t likely to affect your work. Bear in mind, careers that demand long hours on your feet (e.g. nursing or retail), or that require a great deal of physical exertion, (e.g. construction, etc.), may be difficult and put greater strain on your spine over time.
Most career fields offer a much greater variety of job roles than we typically think of or are presented with as teenagers. If you want to be a nurse but think the physical exertion would be too great, perhaps a role as a medical lab technician would be more suitable.
If you are applying for a job and know you will need specific working conditions, it would be wise to mention these needs in the interview. In most cases, employers should be able to accommodate requests for some basic modifications (e.g. a better chair or desk).
If an offer of employment is made, it would also be prudent to review the company leave and medical policies in order to make sure these match your needs (or can be upgraded to do so). Remember, fit is just as important for you as it is for them. If an employer is not able to meet your needs, then their company may not be the right fit for you.
Most teenagers feel insecure about their looks, especially when experiencing a condition like scoliosis. It is really important to stay positive, wear clothing that makes you feel comfortable, and do things that make you feel positive about your looks.
Attitude is everything. Positive attitudes always attract positive friendships. Also, scoliosis is quite a common condition, so you may find that you meet new friends by sharing your story, and if you’d like to share it through TOPS, we’d love to hear from you.
It’s understandable, most people don’t like wearing braces. The good news is that most modern braces fit snugly and are worn underneath clothing, so people often don’t notice. Another thing to keep in mind is that many people have body issues during their teenage years, including wearing braces on their teeth, dealing with hormonal changes that cause acne, and undergoing changes in body shape, so you are in good company.
Most people will not even notice your scoliosis. However, if they do, you can explain to them that it is a fairly common condition that does not keep you from being active or from leading a normal life. If your scoliosis is more severe, then your challenge will be to learn to communicate what you can and cannot do to friends, family, teachers, coaches, etc. You can either let them know in advance or learn to gracefully decline when invited to do an activity that you are not comfortable with.
Of course! In general, people don’t notice scoliosis. And when they do, they usually find it interesting to learn about the condition and how common it is. Remember, we are much more critical of ourselves than our friends are.
In general, it shouldn’t be, but this depends on each person’s situation. As in every activity you undertake, pay attention to how you feel and communicate your needs to your partner.
Occasionally scoliosis can create complications for pregnancy and childbirth. That said, the spinal curvature can become more flexible during pregnancy due to hormone changes that cause the muscles to soften. This means that pregnancy may cause the curve to worsen, but it may also present a unique opportunity to improve it.
Another thing to be aware of is that children require a lot of lifting and carrying, which can put pressure on a scoliotic spine. You’ll need to be vigilant of your posture at all times, especially when carrying the baby. Making use of equipment, such as harnesses with adjustable shoulder straps, for carrying your baby is essential.