What I Mean When I Say I Have Scoliosis

Scoliosis is an extremely complicated condition. According to WebMD, “scoliosis is a lateral (toward the side) curvature in the normally straight vertical line of the spine.” But that’s the super basic, elementary explanation for a very complex condition that affects the body, mind and soul. Scoliosis can cause a ginormous list of physical symptoms that lead to mental and emotional distress. Although those who live with scoliosis are similar in some ways, no two people are really 100% alike in their symptoms and in the consequences they face due to scoliosis. In my time writing my story on The Curvy Spine, I’ve had several people ask what scoliosis feels like. Here’s my brief explanation of what it’s like for me to live with scoliosis:

Those Nights When I Need Help
There are nights when I am in so much pain that I lack the stamina and the strength to adjust my sleeping position, and in order to make it through the night, I hold onto Adam’s arm to help me pull my body up so that I can adjust it. It’s those nights when I think having a rail on one side would probably help. But then the thought of having a rail crosses my mind, and I deal with the mental struggle of it all. It would be helpful to have something that would help me turn in bed, but I hate the fact that I am even considering something like that. I don’t want to live my life in a cage, stuck in my own body, but unfortunately, that’s how it goes sometimes. Luckily, not every day is the same with scoliosis. It hurts to think that there are times when I can’t move because I am in that much pain, and it makes me sad. The worst part is knowing that I can’t do anything to change the pain. I can do things to make it less bad, but I know that it will always be there. Forever haunting me.

Sandbag Vagina
Sometimes, if I stay seated in the same position for too long, everything falls asleep down there, and it is so awkward when I stand up. I deal with this constant worry that everyone around me knows that my lady parts are just now waking up and joining me. I tend to laugh this one off as an extremely funny thing that sometimes happens, but in the end, it adds to my overall sadness and frustration about the symptoms I deal with.

NO! I Dropped Something
I know this sounds weird, but every time I drop something, there is an internal cry inside me. I am always thinking, “Ugh, now I have to pick it up.” I am not lazy. It’s not that. It just requires a ton of effort to bend down and pick up whatever I dropped. Instead of bending down, I often use my toes to pick it up or I do a full-on squat. I always go through a sad moment if I am in some sort of official meeting and I am sitting down and drop my pen to one side. I can’t really bend sideways. My body doesn’t move that way. So, generally, I have to ask for help, or completely stand up, out of my desk or chair (interrupting everyone in the process) and squat down to pick it up. Ugh, it sucks so badly.

My Shoulder
My right shoulder is not only higher than my left, but it is also much further forward. Most of the time, I don’t pay too much attention to my shoulders, but there are times when it becomes so obvious that I can’t ignore it. Like the other day, I was doing the cat cow yoga pose, and as soon as I did the cat pose I stared at my reflection in the mirror and the unevenness of my shoulders became so apparent. I thought about my shoulders for a while after doing that pose, and it became so remarkable that after 21 years of dealing with scoliosis, I am still dealing with some of the same issues I had the very first day. It still surprises me how different my body is from yours.

No Heavy Loads
Two things come to mind:
1. I can’t lift two five-gallon jugs of water plus all my groceries up three flights. It’s literally not happening. Thank god for online shopping. There was a time when I had to plan my heavy grocery shopping around Adam’s schedule so he could lift everything for me.Thankfully, that is no longer the case. Online grocery delivery is here to save the day.

2. I can’t carry my nieces and nephews. Granted, my nieces and nephews are now old enough where it’s no longer such a big deal that I can’t carry them. But there was a time, when they were small, and I couldn’t lift them up for too long. How do you explain to a three-year-old toddler that you are in pain?

There Are Days I Miss My Cane
I bought my cane after falling down the stairs a year ago and it was with me for some time. Whenever I used it, it was like everyone knew I had something wrong with me. Without it, no one knew. I miss it some days, because with it, I don’t have to explain that there’s something wrong. It’s like an outward label that everyone can see. Having a cane lets the world know to back off when I am slow, when I can’t move, when I am having trouble bending. It gives me permission to be slightly different than you.

Sometimes I Just Can’t
If I had the choice I would never let anyone down. I would keep all my scheduled appointments. I would be so social, all the time (sometimes, I ignore my symptoms and go out anyway, and every time I do, I immediately regret it). Unfortunately, I don’t have that kind of control. Sometimes, I can’t handle a simple outing. Sometimes, the pain is too much to handle. There are times I have to cancel plans and stay home, or worse yet, I simply do not make plans. Man, it sucks. I hate doing that. I hate not being able to do something I want to do. But that is my reality.

So when I say “I have scoliosis,” here’s what I ask of you: please be nice to me; understand that I have pain; have patience with me; be aware that I am not always available; know that I am fighting with my body most days; and remember that everything I do takes a lot of effort.

  1. WebMD Scoliosis Page

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10 thoughts on “What I Mean When I Say I Have Scoliosis

  1. Thank you for this – it is very enlightening. I am an osteopath and an amateur historian and I wondered what you though about Richard III and his scoliosis. Is it similar to yours, do you think? And how do you think he would have managed in those times? They found a ‘body double’ who has the same degree of curvature as he did and he said that riding with a medieval saddle gave him ore support than a modern one, also the fitted armour helped to support his curve as well. Perhaps you saw this documentary – if not, you might find it interesting. Here is a link: https://www.youtube.com/watch?v=0_CcB2-zUMk

    1. It looks like Richard the III had a very prominent c-curve. I have an s-curve. At the peak of my condition, my curve looked a lot worse than Richard the III. I am heading to Orlando soon, and I will go through some old pictures and post them. I will also try to take a picture of some old x-rays. I can totally see why the armour helped! It’s like an old-school brace. I have never seen the documentary but I am going to watch this weekend; it sounds fascinating!

  2. Unfortunately, it all sounds too familiar, but don’t be afraid to ask for someone to pick it up for you, (popped two disks in seizure and if I do a straight leg pickup back locks and if I sleep in wrong position its almost immobilising on wakeup and painful of course.) But what worried me about what you said was basically not letting people down. If people cannot appreciate you not able some days, they are certainly not friends and I am sure your family is beyond your explaining absence, but most important do avoid the possibility of isolation. I know you have your partner and colleagues but if possible get them to come to you, indeed they probably need someone as wonderful as you in their existence!

    1. I have a hard time letting people down, but I also have a hard to not being part of it. It’s what they call “fear of missing out.” I surfer through pain just so that I can join the fun. It’s something I REALLY need to work on, but I haven’t quite gotten it right. I do have to be better at asking for help. This is another thing that I am really bad at. I want to be able to do everything, but I know I can’t, and I don’t want to inconvenience anyone. I am still a work-in-progress, but it helps to write it down. One day at a time. Thanks for the lovely comment. I hope you had a nice holiday. Do you have any plans for New Years?

      1. I am afraid mother died 21st so not into seasonal flow. Have a restful holiday and send all my jealousies to your partner please for the new year.

      2. Oh, Dave, I am so sorry for your loss. Sending healing prayers and comforting hugs your way. I know I can’t make your pain go away, but I want you to know I’m here if you need anything. xoxo

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