Scoliosis

Some of the hardest aspects in living with scoliosis, I was diagnosed at eight years old and I'm now almost 43. I've had three major scoliosis fusions. My last surgery was in 2015 due to my new rods breaking and you know I think some of the main aspects is people not realizing how much this can affect you mentally. Mental health is a huge aspect that we need to cover more and be more aware of in the scoliosis community. I myself deal with bipolar depression, anxiety and PTSD. Thankfully these are all well managed with medication now but it has been a hard journey and it's truly a battle every day to battle the chronic pain, the depression and the anxiety.

Yes, the hardest aspect is the embarrassment from friends and family. No matter how much people try to help or people care, it still doesn't stop your own embarrassment of not being the person you was, especially with the incontinence and the not being able to do as much as you used to, and having to moan and groan about your pains and refuse to go for long trips and things like this. I had to work my life around my condition and sometimes it's upsetting in the family, especially with the little ones because they don't understand. So it does grab you and the change of circumstances from not working is quite traumatic.

The hardest aspects of scoliosis for me will have to be obviously the pain, the debilitating pain, and the surprise that scoliosis could do what it has done to me. That was just the biggest thing of nobody telling me about that. Socially, physically, mentally, it absolutely has affected me negatively. I have low self-esteem, body dysmorphia, that's very hard to deal with. And then just the support of others, because sometimes our loved ones and friends don't understand that we are really going through some stuff, and this is painful, because it's not only that, oh, scoliosis isn't that bad. It is, and it can be.

One of the hardest aspects of having scoliosis was actually when I had my, I would have to wear my everyday back brace. I had to wear a specific tank top every time. I always would have to wear the brace over my clothes so I couldn't wear like any crop tops. I couldn't wear the clothes I wanted to wear anymore. I would always have like a very straight body and it would look, my hips would look bulky and people would like judge my like shoulders sticking out and that like broke me somehow but I still survived.

Another hardest aspect of living with scoliosis, like I said, I was diagnosed at eight years old. I'm almost 43 now. After my third surgery, due to my rods breaking, I was not able to return to my career that I loved very much as a certified occupational therapy assistant. It's similar to physical therapy. You know, scoliosis took my dream career away. I wanted children, at least one, and made the hard decision after being fused T1 to S1 with two screws into each hip and my rods breaking. I made the hard decision to not have children. You know, these are things that I struggle with on a daily basis and I just feel like scoliosis has taken many things from me at a young age.

The hardest part of it all is the change of my lifestyle from working 50-60 hours a week to actually working no hours a week because my scoliosis was caused by a car accident. The hardest part I find is the embarrassment, the embarrassment of the incontinence, the embarrassment that if I go too far I suffer with pain. It's just having to explain yourself all the time. That's what I find very hard.