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.
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.
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.”
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.
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 ofresearch so that you can understand the condition better.