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10 Things To Remember if Your Daughter Has Scoliosis

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Learning that your daughter has scoliosis can be difficult to digest. As a parent, you may feel a range of emotions — anger, sadness, frustration, helplessness — all of which are completely valid.

Scoliosis is a serious condition, which can have a major impact in your child’s life.

I remember when I was diagnosed with scoliosis. My mum and dad were sad. They had never even heard of the condition, let alone thought that one of their children could be affected.

Now, keep in mind, this was the 90s’ and the internet was just up and coming. The only information my parents had was from the mouth of my surgeon.

I really feel a sense of sadness when I think of how hard this must have been for them. I can’t imagine not having any control over the health of my child. They had to put 100 percent of their trust in the hands of my surgeon and pray that everything would be OK.

People with scoliosis are affected to various degrees. Our pain levels can make day to day living extremely hard. Trying to imagine what it is like inside the mind of your daughter can be difficult. She may not just be dealing with a physical condition; there are emotional difficulties that may be hard for her to express.

Based on my own personal experience, here are 10 things to remember if your daughter has scoliosis:

1. She knows you love her, but please don’t wrap her in cotton wool.

This may be a hard one for parents to digest. Your natural reaction is to protect your daughter from the outside world so that she doesn’t injure herself.

The truth is, people with scoliosis are bent, but not broken. Depending on the severity of her scoliosis, she will likely know herself and what physical activities her body can tolerate.

Under the guidance of medical professionals, scoliosis patients can often live a relatively typical life.

Try not to stop your daughter from doing what she loves. Going to school camp, catching a movie with friends or swimming at the beach is not going to make her scoliosis worse.

In fact, socializing and having fun with friends might be exactly what she needs to divert her attention from her pain. Sitting at home can make her feel isolated and alone.

2. She may not always like what she sees in the mirror.

The physical struggles are only a small part of having scoliosis. Beneath the surface can lie the battle of a poor self-image.

I remember as a teenager yearning to look like all the other girls at school. In general, kids don’t want to be different, I know I certainly didn’t. After my surgery, I lost a lot of weight which only made my already protruding ribs and uneven hips stick out further.

I hated the scar on my spine. I hated the scar on my pelvis where the bone graft was taken. I wasn’t comfortable in bathers or dresses that showed by back. It has taken me a lot of years to finally accept and approve of how I look.

Be aware that your daughter may be having these feelings. Talk to her, reassure and nurture her. Remind her often that she is beautiful, special and unique no matter what her body looks like, scars and all.

3. Her pain can make her less tolerant.

Whether your daughter is in her teens or in her adult years, living with chronic pain can make her less tolerant. Sometimes, on a bad day, it can feel as though the pain is consuming every cell of her body. This is exhausting, both mentally and physically.

It is something that in adulthood I still battle on a regular basis. I am aware of the moments where I am short tempered, and I now use the correct methods to help me find power over my pain. Practising meditation has helped me tremendously.

I’m not suggesting that pain is an excuse for bad behaviour, especially during teenage years. But having an awareness of why your daughter is seemingly less tolerant can provide you with important feedback.

Once again, communicate with her and let her know that you are here to help and guide her. Let her know that she doesn’t have to face her pain alone.

4. Her scoliosis doesn’t define her.

Sometimes we don’t want to talk about our scoliosis. In these moments, it can be really frustrating when people constantly ask you how you are feeling. It is like a regular reminder of what you are living with.

Keep the communication open, but don’t let the scoliosis take centre stage in your daughter’s life. Try and shift the focus to the other wonderful things she is doing.

I’m not suggesting that you ignore or neglect her condition, but rather make a conscious effort to shine a light on the positive aspects that she is currently experiencing.

5. Encourage her to be active.

I cannot stress enough how important it is for your daughter to remain physically active. Again, under the guidance of medical professionals, ensure that your daughter keeps exercising as best she can.

There are so many inspiring stories of people that have reached amazing physical milestones, regardless of their scoliosis (I’m looking at you, Usain Bolt and Paige Fraser!).

Exercising isn’t only good for your daughter’s physical well being, it is essential for her mental and emotional state.

It has been scientifically proven that exercise has an enormous effect on our mental state. Being active helps the brain to release endorphins, serotonin and dopamine; the chemicals which make us feel good.

6. Sometimes she may feel jealous of her siblings.

As a teenager, I experienced jealousy to a certain degree. I used to look at my older brother and younger sister and feel envious of their straight backs. Why was I the one to be dealt this condition?

Jealously is not a healthy emotion by any means, but being able to express it and talk about it is therapeutic. It can help release the negative feelings and replace them with something more positive.

As a parent, be mindful of the fact that your daughter might be experiencing jealousy. Talk to her and help her work through these emotions.

7. She might get tired quickly.

At times, living with physical pain and emotional stress can be exhausting.

People who haven’t experienced chronic pain often find it hard to sympathize with how draining this can be on the body and mind.

Scoliosis patients have really good days and really bad days.

If you daughter’s pain levels are higher than normal, or if she is feeling particularly anxious, try and keep this in mind.

Allow her to rest when she needs to without making her feel lazy or incompetent.

8. Sometimes she may feel overwhelmed.

People with scoliosis can have days when they feel completely overwhelmed.

Sometimes when our pain levels are high, we can have the tendency to feel like the scoliosis is taking over our minds. The pain is all we think about. It takes so much energy to divert our attention away from the condition. We can feel like we are drowning in the discomfort.

Try and be patient with your daughter and keep the communication between you as open as possible. Learn to recognise the signs that she may be feeling overwhelmed and try different methods to divert and soothe her into a more peaceful state of mind.

9. She may feel like a burden.

I spent so much time as a teenager feeling sorry for my parents. At times, I felt like a burden to them. I felt as though my scoliosis put an enormous amount of pressure on them.

I worried about the cost of my surgery (I still to this day don’t know how much it cost).

My dad had to quit his job to care for me after my surgery. Even though I know it wasn’t my fault, I felt so much guilt for this.

Never ending physiotherapy and visits to my orthopedic surgeon cost a small fortune. I know my mum and dad would never have wanted me to feel this way, but it was in my nature to worry.

Be aware of how your daughter might be feeling about the impact that her condition is having on you as a parent. Reassure her that her scoliosis isn’t a burden to you and that there’s no reason for her to worry or feel guilty.

Children are so clever and often take in more than you could ever imagine. Just because you don’t verbalize your concerns over money, for example, doesn’t mean that she isn’t internalizing and taking on those negative emotions.

10. She is so grateful for your love and support.

Your daughter may not always know how to show it, but she is forever grateful for your love and support. She knows her scoliosis can present challenges. She appreciates everything you have done and will continue to do for her. Having you by her side throughout this journey means more than you could ever know.

A version of this  post first appeared on Beyond Scoliosis

Getty image by Jovanmandic

Originally published: May 16, 2018
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