Scoliosis does not only affect the person living with it; it can also have a very dramatic impact upon their friends and family members. This section is intended to provide resources and advice to the family members and friends of a person with scoliosis, with the goal of empowering these individuals to better understand and support their loved one.
Avoid using words with negative connotations, such as “hump,” “hunchback,” “deformity,” or “disease.” Instead, use words such as “curve,” and “arch.” It’s not a bad thing to have curves, and arches are one of the strongest and most beautiful feats of architecture in existence!
One of the best things you can do for someone with scoliosis is to remind them that they are not alone. Between six and nine million people in the United States have scoliosis, and roughly 100,000 more are diagnosed each year. Famous celebrities, athletes, actresses, and musicians have scoliosis; scoliosis never stopped anyone from being successful or beautiful. There are many wonderful support groups available for people with scoliosis, and in many of these groups, friends and families members are welcome to join as well. Don’t hesitate to be a part of these groups, ask questions, or get involved - don’t think just because you don’t have scoliosis yourself, you can’t possibly understand what it’s like to live with it. You can learn a great deal about the everyday concerns faced by people with scoliosis by reading scoliosis forums and support boards. Empathy and understanding aren’t instincts - they are learned skills that can be developed over time. The more you listen to and appreciate the unique points of view of people living with scoliosis, the better equipped you are to provide support for your loved one.
Different people live with scoliosis in different ways; there is no one “right” way to live with scoliosis. Some people may prefer to be more reserved, while others are comfortable talking openly about their condition. The most important thing is to understand where they are at, and meet them there, rather than telling them what they should be doing, or sharing information with them that they might not appreciate. Hold back on providing advice unless they ask for it; instead, focus on listening to their concerns. If you want to volunteer to provide them with information, ask for their permission first (“I heard about this new treatment for scoliosis; are you interested in hearing about it?”). Sometimes, people need to be granted the freedom to make their own decisions, and come to their own conclusions.
It can be possible to offend someone with scoliosis without realizing it. The burden of being courteous and civil falls upon the speaker - it is not the listener’s fault if they are hurt by a mis-spoken word. Avoid criticizing their posture; you may be trying to be helpful by reminding them to “sit up straight,” but the truth is that posture is not something that can be consciously controlled. You can control it for a little while, but as soon as you stop exerting conscious effort, it will return to its natural state.
The impact of scoliosis upon someone’s emotions and self-image is often ignored or downplayed, and this is very unfortunate. A study done at the University of Minnesota found that teenagers with scoliosis are more prone to substance abuse, depression, and suicidal thoughts. If you are worried that someone you know with scoliosis might be depressed, do not be afraid to ask them what you can do to help. If their depressed mood is particularly severe and long-lasting, professional counseling or additional measures should be considered. Do not ignore the signs of depression, and always take mental health seriously. There is a stigma against being open and honest about it, but the fact is that depression is a serious condition that should not be ignored. It may be just a passing phase in the teenage years, but it could also be the warning signs of something much more serious. If you feel that your friend or family member is struggling with mental health issues, don’t be afraid to bring it up to them and, if necessary, a professional.
Living with scoliosis is not easy; it should not be dismissed as “just a little curve.” It can cause muscle pain, and reduced lung capacity, which in turn can make daily tasks - like cleaning the house or lifting things - more difficult and stressful. It affects more than just the physical body, as well; people’s emotions and self-image are affected by scoliosis. Always understand and keep this in mind. If someone with scoliosis is complaining about pain or tiredness, they may have already been dealing with it for a while in silence, and it just could finally be reaching the limit where they have to say something.
At the same time, avoid feeling sorry for someone with scoliosis; they probably don’t want or need your pity. This approach only makes people feel more self-conscious of their condition, and doesn’t allow them to shine as they could otherwise. We are all born with unique challenges to overcome, and scoliosis is just another one of those. Yes, some people have to wear a brace or do exercises for their scoliosis, but other people have to deal with managing their diabetes, or using an inhaler for their asthma. Don’t promote a “victim” mentality, and encourage them not to feel helpless about their scoliosis.
If you’ve ever doubted that a small thing could make a big difference, try sleeping in a tent with a mosquito!
Everyone deserves access to truthful and accurate information about their condition. That being said, there are some facts about scoliosis that can be somewhat scary or intimidating at times. Don’t let that discourage you, or your loved one. It’s important not to hide from the truth, but it’s also important not be defeated by it. Maintain a positive attitude and always believe that things will get better. Life is not a destination but a journey, and every road has its hills and valleys - and some curves!
CLEAR provides a unique and innovative way of understanding scoliosis. Sign up to receive facts and information you won’t find anywhere else.