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15 Things People With Scoliosis Want You To Understand

15 Things People With Scoliosis Want You To Understand

Scoliosis – adults have certainly heard the term and know that it refers to a curved spine. They don’t think about it much, though, because it isn’t publicized as a serious condition. And, they don’t really think of it as a handicap or disability either. It’s just one of those things that some people have.

Moderate to severe scoliosis, however, can be really debilitating and really painful, not to mention dangerous to lungs and the heart. While people don’t mean to be critical or mean, their lack of understanding about this condition often causes them to seem to be. So, here are 15 things that Scoliosis sufferers want others to know, so that these non-sufferers can have some empathy for the victims of the condition.

1. We have a real disability

No one really knows the cause, but I‘ve had it since the age of 11, and it got worse as I grew older. It now really impacts my life a lot, and there are lots of things I avoid because of it, not because I am anti-social or lazy.

2. We are in a lot of pain on the bad days

If I am complaining about back pain, it is because it has gotten so bad that I just can’t keep it in any longer. Please don’t make statements like I must have just “slept wrong” the night before. It would be nice to hear you say that you are sorry that I am in such pain and is there anything you can do? Just offering to get me a cold drink so I can down my pain meds would be appreciated.

3. We already feel really self-conscious about our looks

We are trying our best to stand up straight as much as we can. When you make comments like, “Don’t you think it would be good for you if you forced yourself to stand up straight?” you only make us more self-conscious. If I could stand straight more, I would — believe me. I don’t enjoy looking like this either. But it’s something I have to live with.

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4. We feel it differently every day

Some days the pain is minimal, other days it is so bad I even have to pull off the road until the spasms subside. So, if you see us doing pretty well one day and very badly the next, please don’t ask if we think some of it might be “mental.” It’s not. The nature of this condition is that there are good and bad days, and no one really knows why. That’s the frustrating part – there just aren’t the answers that all of us who have scoliosis really want and need. Research funding for Scoliosis is pretty minimal, since there are so many other life-threatening diseases that must take precedence.

5. We find desk work particularly hard

We “slouch” in our chairs as it is probably the most comfortable position anyone with scoliosis can get themselves into. Even the newer ergonomic chairs available in most offices don’t help much. Don’t make comments about how I am not using the chair properly — it is because I can’t.

Stand desks can be our best buddies, especially those DIY models you can assemble up to your liking. However, we can’t spend too much time in front of them either. We are not being picky or restless when it comes to our working places. It’s just a tad bit difficult for us to find the optimal position we can comfortably spend the whole day in.

6. We can’t make plans ahead of time

This is because we never know what kind of day we’ll be having. When we have to cancel something at the last minute, please know that we are as upset about the cancellation as you are. But please don’t get angry with us. If we had plans for an after-work Happy Hour, and we cancel, it is because the best we can do right now is get home and try to find some comfortable position that will ease the pain. We really do want a social life, but the scoliosis often gets in the way.

7. We don’t just have a crooked spine

That crooked spine causes many other things too. One of my hips is higher than the other, one shoulder blade protrudes more than the other, one of my legs is longer than the other. And my ribs push on my lungs, making it more difficult to breathe. If I am out of breath after walking around a bit, please don’t kid me about being out of shape. It’s my ribs that are out of shape, not me. I get as much exercise as I am able, but my breathing issues do keep me from a lot of the physical activity that you take for granted. Even walking up and down hills is really tough for me.

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8. We have to turn down offers to join the office volleyball team and most other group activities

When we turn down offers to be on the office volleyball/baseball/golf/any other team, please don’t think we are being “standoffish” or “unsociable.” We would love for someone to ask us to come and be the scorekeeper or perform some other supportive duty. In fact, we usually volunteer in these circumstances. We really do want to be a part of what others are doing, but often we have to participate in a different way.

9. We experience certain emotional consequences to scoliosis

We don’t just have good and bad days related to the levels of pain. We have emotionally good and bad days too. The lack of being able to lead a normal life, the pain, and the physical appearance just really get to us sometimes. We try to put on a “tough” exterior, but we can’t always keep it together. So if we seem depressed or if you see us getting teary-eyed, please don’t tell us to put a smile on our face and “snap out of it.”

Some days I just don’t want to, and others days I just can’t. If you could put yourself in my position, if only for a day, you would understand, I know. But since you cannot, please just give me a kind empathetic statement, like “I am sorry you are having a bad day. If there is anything I can do, please tell me.” That lets me know you care, and that is important.

10. We have troubles with finding clothes that fit well

Given that one shoulder and one hip are higher than the other, given that my stomach and butt may protrude, given that my ribs are protruding on one side, I have to carefully select the clothing I buy in order to hide as much of my physical deformities as possible.

Most of us actually prefer winter because we can look quite stylish in clothes that are bulky. Spring and summer are the bad months, because the clothing reveals so much more of the body. So, if we seem really out of style with our clothing selections, especially in the warm seasons, please understand that we would love to dress more fashionably, but we just cannot make ourselves expose the “deformities.”

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11. We can suddenly experience tremendous pain

Simple things can send our back, legs, and ankles into spasms of pain. I dread colds, because a simple cough or sneeze can “do me in.” If I bump into a desk or chair, or have a little minor fender bender, I can be in pain for hours afterward.

It’s easy to think of us as hypochondriacs, I know, but please understand that we are not exaggerating the pain, and that we are not looking for sympathy. Please just acknowledge that our pain is real. When we see you and someone else rolling your eyes at one another while we are experiencing spasms of pain, it starts hurting even more!

12. We are not lazy

Very basic activities, like cleaning the house, involve some pretty major planning. First, we can only do this on the “good days.” Second, it takes us twice as long as someone else to complete the same cleaning chores. We have to mop, dust, and vacuum very carefully and slowly. We have to avoid bumping into things. We have to watch our stretching, pulling, and pushing.

So, if you should visit me at my house and it is not clean, please do not think I am a bad housekeeper. Understand that I probably have not had a good enough day to get the house cleaned this week. And please don’t go out and comment to others about the condition of my home. It’s hurtful, and giving people the impression that I am lazy is not fair.

13. We don’t usually go to the pool or to the beach

I don’t do this because I would never put on a swimming suit. If I ever do attend an outing of that type, the best I can do is shorts and a good-sized T-shirt. I may dangle my feet into the pool from the side or walk into the shallow part of the lake or ocean, but I will not be swimming.

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Please don’t chide us for not bringing a swimsuit – we feel badly enough about it already. Swimming is actually a good exercise for us, and we do go to rehab centers often because they have a pool and we can swim with other Scoliosis patients.

14. We will gladly explain Scoliosis if asked

When people ask us to explain the condition, it makes us feel good. Obviously, the person wants to understand why we have the symptoms and why too many activities are so difficult and/or painful for us. Believe me, I keep up on all of the latest research and treatments because I want to take advantage of anything that might ease my symptoms. How much time have you got?

15. We may not be active participants in all of our kids’ activities

We really want to be. So, if the girl scouts are planning a weekend campout, we do want to go. We will bring our pain meds and we will tell you what we can and cannot do. We may not be able to paddle a canoe, and we may not be able to go along on a nature hike up and down hills, but we will bring the guitar and teach the girls some great fun songs around the campfire at night.

We may not be able to participate in the parent-son softball game, but we would love to help out in some other way on game day. We’ll volunteer to pass out drinks. We’ll wash the team uniforms after the game. We’ll be the best vocal cheerleaders ever. Please find a spot for us!

Scoliosis is permanent. And that realization to sufferers is very difficult to deal with. Most who have it started out with a very mild form that developed during a growth spurt period before puberty. Over the years, however, it gradually worsened, and no one really knows why. Some people develop a very mild form that stays very mild all of their lives. Others are severely handicapped by it as adults. If you work or socialize with someone who has moderate-to-severe Scoliosis, it would be really nice to do a bit of research so that you can understand the condition better.

Featured photo credit: angela c. via flickr.com

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Last Updated on September 20, 2018

How to Stay Calm and Cool When You Are Extremely Stressful

How to Stay Calm and Cool When You Are Extremely Stressful

Being in a hurry all the time drains your energy. Your work and routine life make you feel overwhelmed. Getting caught up in things beyond your control stresses you out…

If you’d like to stay calm and cool in stressful situations, put the following 8 steps into practice:

1. Breathe

The next time you’re faced with a stressful situation that makes you want to hurry, stop what you’re doing for one minute and perform the following steps:

  • Take five deep breaths in and out (your belly should come forward with each inhale).
  • Imagine all that stress leaving your body with each exhale.
  • Smile. Fake it if you have to. It’s pretty hard to stay grumpy with a goofy grin on your face.

Feel free to repeat the above steps every few hours at work or home if you need to.

2. Loosen up

After your breathing session, perform a quick body scan to identify any areas that are tight or tense. Clenched jaw? Rounded shoulders? Anything else that isn’t at ease?

Gently touch or massage any of your body parts that are under tension to encourage total relaxation. It might help to imagine you’re in a place that calms you: a beach, hot tub, or nature trail, for example.

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3. Chew slowly

Slow down at the dinner table if you want to learn to be patient and lose weight. Shoveling your food down as fast as you can is a surefire way to eat more than you need to (and find yourself with a bellyache).

Be a mindful eater who pays attention to the taste, texture, and aroma of every dish. Chew slowly while you try to guess all of the ingredients that were used to prepare your dish.

Chewing slowly will also reduce those dreadful late-night cravings that sneak up on you after work.

4. Let go

Cliche as it sounds, it’s very effective.

The thing that seems like the end of the world right now?

It’s not. Promise.

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Stressing and worrying about the situation you’re in won’t do any good because you’re already in it, so just let it go.

Letting go isn’t easy, so here’s a guide to help you:

21 Things To Do When You Find It Hard To Let Go

5. Enjoy the journey

Focusing on the end result can quickly become exhausting. Chasing a bold, audacious goal that’s going to require a lot of time and patience? Split it into several mini-goals so you’ll have several causes for celebration.

Stop focusing on the negative thoughts. Giving yourself consistent positive feedback will help you grow patience, stay encouraged, and find more joy in the process of achieving your goals.

6. Look at the big picture

The next time you find your stress level skyrocketing, take a deep breath, and ask yourself:

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Will this matter to me…

  • Next week?
  • Next month?
  • Next year?
  • In 10 years?

Hint: No, it won’t.

I bet most of the stuff that stresses you wouldn’t matter the next week, maybe not even the next day.

Stop agonizing over things you can’t control because you’re only hurting yourself.

7. Stop demanding perfection of yourself

You’re not perfect and that’s okay. Show me a person who claims to be perfect and I’ll show you a dirty liar.

Demanding perfection of yourself (or anybody else) will only stress you out because it just isn’t possible.

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8. Practice patience every day

Below are a few easy ways you can practice patience every day, increasing your ability to remain calm and cool in times of stress:

  • The next time you go to the grocery store, get in the longest line.
  • Instead of going through the drive-thru at your bank, go inside.
  • Take a long walk through a secluded park or trail.

Final thoughts

Staying calm in stressful situations is possible, all you need is some daily practice.

Taking deep breaths and eat mindfully are some simple ways to train your brain to be more patient. But changing the way you think of a situation and staying positive are most important in keeping cool whenever you feel overwhelmed and stressful.

Featured photo credit: Brooke Cagle via unsplash.com

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