Life With an Invisible Disability

As I sit here in my office chair, the mid section of my back is on fire. At least it feels that way. I know this is from today’s activities. Sitting in my office chair for a number of hours and walking while holding the hands of two little girls for 20mins. They’re short.

I have severe scoliosis. A 60 degree curve in my spine. On an x-ray my spine looks like the letter S.

I don’t remember what a day without back pain is like. I know there must have been a time when I didn’t have back pain but I don’t remember what it feels like.

I’ve held back on talking about this since Maturing Mama was a wee little blog. For me this issue is one of the scariest. When I look into my past, I can point to a key moment in time when my depression started.

It was when we lived in Trinidad and it was the day of my older sister’s highschool graduation. The night before we had watched an episode of Sabrina the Teenage Witch. In that episode her heart and brain did not align on a decision she was making. So her body was stretched to the left and her head to the right. It’s a fictional story of course.

I remember looking in the mirror as I got dressed that morning of my sister’s graduation. I was in my underwear. My twin sister came up to me and said, “You look like Sabrina from last night!”.

My mom came over and asked me to try to straighten myself and I couldn’t. She said we would have to go to the clinic right away.

I remember sitting in the waiting room awaiting the results from the x-ray we had just gotten. The receptionist thought it would be a good idea to play a locally made video about scoliosis on the TV there. In it, they showed the most severe cases of scoliosis. It was terrifying. The bodies of children and adults so severely curved they struggled to walk and breathe.

The video then displayed the surgery they do to repair the spine. The video literally showed the doctors cutting into the back of a woman lying unconscious and naked on a table. She was completely exposed. And they then cut into her like she was a piece of meat.

It was after this video the doctor called my family in to give us the news that I did in fact have severe scoliosis that would need surgery. My twin sister and I held each other sobbing.

My mom explained to the doctor that the video they showed in the waiting room was completely inappropriate for the fact that we were in a scoliosis clinic.

The doctor explained that they show that video to encourage parents to take their children’s illness seriously before it gets worse.

There is definitely some unresolved issues in my heart from that moment in my life. But I was so blessed to have my mom there- a very bold and wise woman. She told the doctor we will not be having surgery. At this point, we were working hard to move to Canada. My mom said she felt safer having doctors in Canada do the surgery. So I was measured for a back brace instead.

I wore a back brace for three years from age eleven to thirteen. I hated every moment of it. The material of the brace made my skin crack and dry out. It caused rashes in different regions of my body. For the first year of wearing this in Trinidad, it was horrible. I was always sweating. I often smelt bad because the back brace could not be washed. We could only rub it down with a solution.

I was in my preteen years while wearing this. Kids in school made fun of me. In Trinidad they called me, “bosie back”, a rude phrase highlighting that I had a bad back. In Canada I was called a robot. Clothes fit me funny.

Not to mention, the clothes I wore underneath the back brace embarrassed me so many times. You see, it wasn’t enough wearing a simple undershirt with my back brace. It would ride up and irritate the skin that was exposed. So my mom came up with this idea that truly helped. We would put two shirts on under the brace. One right side up and another upside down. But the tank top that was placed upside down had the tendency to slip out of my clothing and a strap would hang out that would look like a tail. Luckily most times this happened while my twin sister was close by to assist me.

I hate talking about this. Even though it was so many years ago it hurts to talk about. It was the worst time of my life. When I started junior high and I would walk the halls, if a kid bumped into me, they would look at me with terror in their eyes. They would be wondering what they had just hit.

The doctors in Canada said I didn’t need surgery in their opinion. They said they were especially impressed with the amount of activities I was capable of doing with the extent of my spine’s curve. So at age thirteen I got a call from my doctor. He said I was just about finished growing and as long as I kept up with daily exercise, I could expect to not need surgery.

I remember shopping for clothes that fit my body. My mom was so careful to buy shirts that didn’t show the bend in my body. And as I walked around at home she would come up behind me and straighten my posture if she saw I was leaning funny.

I figured out that with effort, I could hold myself steady enough to look straight. But if I walked in a relaxed manner, I would go crooked.

I love that I can hide my deformation. However, to this day I am ridiculed if I mention that I do have a physical disability. I can hide it with clothes. I can keep quiet about the pain I’m in daily. Therefore, if no one else can see it, then I am perfectly capable of handling life like everyone else.

I remember one time I was in a group setting with friends and we were having a serious conversation about spine issues. I pointed out to everyone that I actually do have this issue. And in explaining I let my back relax to show the extent of the curve in my spine. One girl burst into laughter and mocked me. She didn’t believe I was telling the truth.

I mentioned to friends at one point, in excitement, that I had the option to take disability assistance while studying at University and I was verbally attacked in public about this. They didn’t think it was fair for me to receive money for a disability they couldn’t see.

The right side of my back has most of the muscles that should be spread out evenly in my back. Because of this, I struggle to carry heavy items on my left side. I’ve literally wiped out in public when someone put something in my left hand.

I love being pregnant but I’m literally stuck in bed from the moment I start to show, because of my back. Bending over to do things is a horrible feeling. Changing diapers is a moment of having sharp pain shooting up my back. Looking for items in the lower cabinets of my kitchen, having my kid fall asleep on me while lying in bed or on the couch can leave me in pain for days.

But I don’t complain. I don’t take pain medication. I ask for help. I stretch it out.

There are points when I’m at home and I ask my husband to help me with something that someone with out back issues can handle with ease. I’ve been called out by relatives in these moments. They’ve thrown comments my way insinuating that I am lazy, bossy and taking advantage of my husband. All because they do not take seriously the fact that I have a disability they cannot see.

I recently visited a surgeon about my back. I just wanted to be normal. I didn’t want to have back pain anymore and I wanted to be perfectly straight without the need to hold myself up.

The surgeon refused to do the surgery. He said it would take multiple surgeries to get me straight. Some surgeries from the back and some from the front. He said there’s a high chance I could end up in worst pain than I currently am or in a wheelchair for life.

This is my reality. No one can see what it takes for me to sit in my office chair for an hour straight. When I work in my office for hours, I go from sitting in my chair, to lying on the fouton, to laying on the floor, to doing stretching exercises so I can do it all over again to keep working.

To everyone reading this, please don’t judge someone who says they have a disability that you cannot see. Please encourage others to not do the same. I’ve watched TV series that have made fun of the idea of scoliosis but it’s not fun or funny. It’s a life altering condition.