Let’s face it: Scoliosis can be a real pain in the ass at times. The pain associated with it can be mentally draining and is physically demanding at the best of times. Unfortunately, it changes from day to day, making it emotionally taxing not only for the people living with it but also for the people who love them.
Sometimes, situations have to be avoided, needs need to be accommodated, plans change, and ultimately, pain takes top priority. It’s all these factors that can make scoliosis understandably exhausting for everyone involved. It doesn’t matter whether you’ve been together for years or you’ve recently met on a disabled dating site, if you love someone with scoliosis and you’re having trouble dealing with it, here’s a cheat sheet to help you get started. I hope you enjoy having a read!
01. Consider yourself super lucky to know them. They are probably one of the strongest people you will ever meet. Let me break it down for you: it’s pretty easy to get caught up with the small things. You know, all the pain and issues associated with scoliosis, and the not-so-fun, unavoidable spinal deterioration can be a real mood-killer. However, you know and love one of the strongest people alive. They are determined, dedicated, and full of strength. They have dealt with agonising pain and discomfort for years with a smile on their face. And your job is to support and love them for the years to come. You are pretty damn lucky in my book. Not everyone knows and loves someone as tough as you do.
02. Remember they are more than just their scoliosis. I know this sounds pretty obvious, but people tend to become blind-sided by any physical limitation. It’s as if once they know the person has an invisible disability, they have to walk on eggshells. But trust me on this one — it’s weird — don’t do it. The person you know is a complex and wonderful human being and doesn’t need to be labelled by one small characteristic. They are so much more than this one trait.
03. Sometimes even the smallest things can be exhausting. Pain is exhausting and completely draining. And if you are not in pain, it’s sometimes hard to remember just how tiring it can be. Pain comes from the body constantly fighting its issues, and it’s that internal fight that leads to exhaustion. Everyday situations tend to be a lot more draining for people dealing with pain all the time. So the next time you’re pushing your friend with scoliosis to do something or asking them to go somewhere with you and they don’t want to join your proposed adventure — just remember that they may genuinely be really tired and need a break. Don’t force them to do anything they don’t want to do.
04. They are well aware that their pain doesn’t always make sense. Pain doesn’t always accommodate pre-existing plans. Being aware of this might make it all easier to deal with. One of the most frustrating aspects of scoliosis is the difference one day can make. One day, they can be running a marathon, and the next day, they might not want to move. Pointing out what they were able to do yesterday, but are having trouble doing today, doesn’t help at all. Instead, try being supportive and understanding of their needs.
05. Don’t keep asking “Are you OK?” while they’re dealing with muscle spasms. When you see someone clenching for dear life because they’re trying to survive a muscle spasm, please don’t ask them if they’re okay. To be frank, they probably feel like their entire body is giving up on them. So instead of asking them if they are OK, try saying something helpful, like “You’re doing great — remember to breathe”.
06. They appreciate you being there. Let’s be honest, we all know scoliosis sucks sometimes. It’s hard for everyone involved, including the people supporting them. But your support doesn’t go unmissed; they’ll hopefully recognise all you’ve done for them, and they’re most definitely not oblivious to what it takes to stick by them. So on behalf of my fellow people living with scoliosis, I would like to personally thank all those supporting and loving a person with the condition. In the words of Tina Turner — you’re simply the best!
07. Don’t get sad if you feel ignored; I swear it’s not intentional. It’s very challenging being uncomfortable and in pain most of the time. Chairs are not made for people with deformities or people with rods in their spines. So if you’re in the middle of telling a story and you notice they are twitching and spacing out, remember they might be dealing with something internally that they’re not vocalising. It takes a lot of concentration to be able to ignore discomfort and pain and focus on a story or conversation. They want to be a part of the conversation. They want to be involved in what you’re saying. I promise they’re not ignoring you; they’re just trying not to break down right there in front of you.
08. They might not know how to ask for help. They’ve probably dealt with pain their entire life, so they know what they’re doing. But even the toughest of people need a little help sometimes. And that’s not always easy to recognise. As a support system, remember to be available so when they do finally reach out for your help, you’re always there.
09. It’s totally OK to be frustrated. Part of loving someone with scoliosis is taking on some of their frustration. There are times you may want to scream, to cry, to be completely upset that there aren’t more solutions available for people living with scoliosis. You may go through days where you will wish it was you instead of them. You may want nothing more than to change their situation, to fight with every orthopaedist that provides zero solutions, because you will want nothing more than to make their life easier. And it can be incredibly frustrating knowing that there’s actually very little you can do. Just remember, you are vicariously dealing with scoliosis, so it’s OK to be frustrated. And it’s OK to be upset. You’re only human, after all.
10. Remember they don’t always see their scoliosis as a limitation, and neither should you. The pain sucks. The discomfort is challenging. The deteriorative nature of the condition can be debilitating. But just because it’s challenging, that doesn’t mean their life is over. Scoliosis has likely influenced the person they are today. Remember they are who they are — the incredible person you love — is at least in part because of what they’ve been through.
So there you have it — the ultimate cheat sheet. Keep this list in mind for when you’re next having trouble being the support person. It might help you survive those tough days. Good luck!