Updated on June 27, 2015
4 Ways to Support a Loved One Who Has Scoliosis
June 27 is International Scoliosis Awareness Day, so I wanted to write a handy “awareness guide” geared toward helping our friends and family better understand scoliosis, and what we as scoliotics would like for them to understand about our inner thoughts and needs regarding our condition.
So if you don’t have scoliosis but know someone who does, this post is for you! Thanks for reading! 🙂
First, Let’s Learn Some Terms
*Note: Feel free to skip this section if you don’t like reading medical-y stuff.
All spinal curvature is just “scoliosis,” right?
Not exactly. There are several terms scoliotics use to describe their particular type of scoliosis, so I’ll break it down for you in layman’s terms:
Lordosis: Where the lower back is significantly curved inward. You can replicate this condition by exaggerating the arch in your low back to stick your butt out (then make a pouty face and post it to Instagram!), but also let your gut hang out (not so cute for your Instagram photo). This is like lordosis.
Kyphosis: Marked by a hunched back, where the upper back is abnormally curved into a rounded shape.
Scoliosis: Ah, the “classic.” Spines with scoliosis usually make an S-shape or a C-shape. Scoliosis has its own fun terms to know!
- Terms to describe the curve itself:
- Dextroscoliosis: A spinal curve that goes to the right.
- Levoscoliosis: A spinal curve that goes to the left.
- Terms to describe the location of the curvature:
- Thoracic scoliosis: “I’ve got a curve is in the middle of my back.” (Most common, btw.)
- Lumbar scoliosis: “I’ve got a curve in my lower back.”
- Thoracolumbar scoliosis: “I’ve got curves in my upper AND lower back.”
Even more descriptive scoliosis terms!
Idiopathic scoliosis: “Idiopathic” pretty much literally means, “We don’t know,” so it’s used to describe scoliosis that seems to come from nowhere, usually starting at puberty.
Congenital scoliosis: A condition where a baby is born with scoliosis :(.
Neuromuscular scoliosis: Where scoliosis occurs due to another neuromuscular condition.
Degenerative scoliosis: Usually called “adult scoliosis,” this can happen later in a person’s life when joints in the spine start to degenerate.
Scoliosis caused by trauma or environmental conditions: Remember Bethany Hamilton? The girl whose arm was bitten off by a shark while she was surfing? Amazingly, she continues to surf, but since she only paddles using her right arm, that side of her body became much stronger than her left side, so the strong muscles on her right side began to pull her spine into a C-shape. She has reversed her scoliosis using Egoscue, (which, I you’ve been reading this blog for any amount of time, you know I’m a huge fan!) but her case is a perfect example of someone with trauma-induced scoliosis.
Other Quick Facts
– The earlier scoliosis is detected, the easier it is to manage over a person’s lifetime.
– Most everyone has SOME degree of curvature in their spine, but it only becomes something to worry about when the curvature is greater than 10 degrees.
– Scoliosis is most common in females, and usually appears at puberty.
– It is typically genetic.
– The most common route to treating and managing scoliosis is to brace the scoliotic (if they’re still young and growing) to try and slow the progression of the curve, then eventually they receive surgery to straighten the spine, usually in the form of rods, staples, or tethering.
“THAT WAS AWFUL. Can we get to the part where I learn how to help my scoliotic friend/family member?”
I know, medical-y things and facts can be tedious, but hey! It’s important and over with, so let’s move on to the actionable bits!
4 Ways to Support a Scoliotic
I have to give lots of credit to the members of the Scoliosis Warriors Facebook page for sharing their answers to The Mighty’s question, “What’s one thing you wish others understood about living with scoliosis?” I used many of the users’ answers as inspiration to compile a quick, helpful guide to help you, the caring friend or family member, support the scoliotic in your life!
1) No teasing about appearance: “You really should stand up straight,” “Your shoulders are so uneven you look lopsided!” “Hey there, hunchback!”
Trust me—scoliotics can be really, really self-conscious about their appearance, and will even avoid wearing certain clothes to better hide their curves, dips and “poochiness.” You wouldn’t make fun of someone who’s genetically predisposed to premature balding (at least I hope not?), or someone who was born with other genetic defects, so think of scoliotics the same way—off-limits to teasing.
2) It is a life-long issue with no known cure: There are no quick fixes, and it can get worse over time if it’s left untreated. Scoliotics need your patience and understanding, because they’ll be dealing with this for the rest of their lives.
3) Scoliotics often fear the future: No two cases of scoliosis are the same, so while there are some amazing success stories, there are also some scary ones, so it’s likely the scoliotic in your life has had thoughts like, “Will I be able to have children?” “Will my condition get worse as I age?” “Will I be able to keep my job/continue to do all the active things I love, or will I eventually become disabled?”
4) But most of all, scoliotics want you to understand the pain:
The pain can be caused by the nerves along the spinal cord being pinched between the vertebrae (where the spine curves, the vertebrae become too close together, often pinching the nerves between them), or can come from the intense muscle spasms all along one side of the scoliotic’s back, or it can come from elsewhere in a scoliotic’s body. Lots of places can be affected and in pain, because a twisted spine can screw up lots more than just your back.
- The nerve pain feels like sharp, shooting, electrifying pains—you feel like you’ve been tasered.
- The muscle spasms are huge, cramping knots that can never be worked out, no matter how long they’re massaged.
- Because the back is unbelievably sensitive and in chronic pain, never slap a scoliotic on the back, make them fall on their back, etc.
- (I know for me, the pain of receiving even a good-natured slap on the back can leave me breathless.)
This pain can lead to lots of emotional, physical and mental fallout:
- Depression can come rushing in, even after a scoliotic has received the surgery (because their activities will still be limited), or even after a scoliotic discovers that an alternative method is helping them. It’s hard knowing that your body is malfunctioning for no apparent reason, and that your fight against it will never stop.
- For some scoliotics, the pain can lead to a literal handicap, where they need disabled parking spaces, walkers and wheelchairs.
- There can be great difficulty even to breathe. The twisting of the spine can make the ribcage twist, which can push into the organs (including the lungs) of scoliotics. It’s scary, it’s uncomfortable, and can even lead to dizziness from lack of oxygen!
- Scoliotics are very sensitive about being perceived as quitters, complainers, or trying to get out of doing something. The truth is, scoliotics are uncomfortable or in pain all day, every day, so if they start mentioning that they’re uncomfortable, or in pain, or that they’re physically unable to do a task, it’s because there’s something really wrong or truly is impossible.
- For example, many scoliotics are physically incapable of doing a full squat or sit-up exercise, perhaps not because we are lacking strength, but because our spines are literally unable to move in that way.
- Scoliotics will often contort their bodies in strange ways just to get comfortable.
- For example: When I know I’ll be standing somewhere for a long time, I will stand pigeon-toed, because it helps my pelvic bones rest in a neutral position and gives my knees a break, but I often get really funny looks :).
There You Have It
Congratulations, you have been “made aware”! Of course, this is a very complicated condition with many facets, so there’s no way I could have included everything, but my hope is that this amount of information will give you a starting place to talk with the scoliotic in your life about their story, what their challenges and needs are, and how you can better support them.
Thanks so much for taking the time to read this! Feel free to leave a comment below, and check out the rest of Getting Better By Degrees!