Let’s face it: scoliosis can be a real pain in the ass sometimes. The pain associated with it can be mentally draining at times, and physically demanding most of the time, and unfortunately, it changes day-to-day, making it extremely emotionally taxing 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. So if you love someone with scoliosis and you’re having trouble dealing with it, here’s a cheat sheet to help you get through it.
1. Consider yourself lucky to know them. They are probably one of the toughest people you will ever meet. Let me break it down for you: It’s pretty easy to get caught up on 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 toughest people alive. They are determined, dedicated, and full of strength. They have dealt with agonizing 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.
2. Remember they are more than just their scoliosis. I know that sounds pretty obvious, but people have a tendency 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. Trust me, it’s weird, don’t do it. The person you know is a complex and wonderful human being and doesn’t need to be labeled by one small characteristic. They are so much more than this one trait.
3. 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 is 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 next time you are pushing your friend with scoliosis to do something or go out, and they don’t want to join your proposed adventure, just remember that they may actually be really tired.
4. They are well aware 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.
5. Do not ask, “Are you OK?” while they’re dealing with a muscle spasm. When you see someone clenching for dear life because they are trying to survive a muscle spasm, do not ask if they are okay. To be frank, they probably feel like their body is entirely giving up on them. So instead of asking them if they are OK, try saying something helpful, like “remember to breathe.”
6. 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 hopefully recognize all you’ve done for them, and they are 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 scoliosis. You are all the best!
7. Don’t get sad if you feel ignored; it’s probably 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 are 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 are not vocalizing. It takes immense 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 are saying. They’re not ignoring you; they’re just trying not to break down right there in front of you.
8. They might not know how to ask for help. They have probably dealt with their pain their entire life; they know what they’re doing. But even the toughest people need a little help sometimes, and that’s not always easy to recognize. As a support system, remember to be available so when they do reach out for your help, you are always there.
9. 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 orthopedist 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 is very little you can do. Just remember, you are vicariously dealing with scoliosis, so it’s OK to be frustrated. It’s OK to be upset.
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 have become. Remember they are who they are — the incredible person you love — at least in part because of what they’ve been through.
So there you have it, the ultimate cheat sheet. You’re welcome. Keep this list in mind when you’re having trouble being the support person — it might help you survive those tough days.
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