What Happened When My Invisible Illness Stopped Being So Invisible

When I was born, my mother looked down at me, her perfect little angel. 10 fingers, 10 toes. A little late, but otherwise perfectly healthy. I did all the normal things babies did. I cried when I should, I ate when I should, I slept when I should.

When I was younger, I used to struggle to sleep because the pains in my legs would keep me up. I used to climb out of bed and into my dad’s lounge and complain “Daddy, I can’t sleep because my legs hurt.” “It’s just growing pains. Go back to bed.” Like many parents, they were under the impression that growing pains were just a part and parcel of growing up. They didn’t know that growing shouldn’t hurt so much and so often.

The body grows in tandem. Your bones don’t suddenly sprout, leaving the rest of your body to stretch in anguish to catch up painfully. Kids will be kids and end up with the odd aches and pains from falling from things, chasing each other, and learning how to control your bodies. But sometimes, for kids like me, it’s different.

Fast forward to 14 years old. I wake up stiff every day, my back aches like someone 4 times my age, and my hip snaps every time I walk. I’m seen by a GP, and 3 orthopedic doctors, who tell me I have snapping hip syndrome. I get physio. She suggests I wear a low heel every day to help my posture, and hopefully my hip won’t snap as much. It works, but my back now hurts more than ever. I’m fatigued.

At 19, I get diagnosed with Ankylosing Spondylitis.

My back hurts like someone has replaced my bones with hot steel. My ribs groan and burn under every breath. It takes me 15 minutes every single morning to get from lying down in bed to standing upright. Daily medication to ease the pain, but never enough. Fatigue that ruins every hope of productivity. Nausea. Sore eyes. Tummy troubles. Despite all this, I could tell people I was fine and healthy and have them believe me. I never lost a job because people looked at me and knew I was ill. I was perfectly fine and able to blend into a crowd, and fit in. It was hard, but I could be invisible.

Being invisibly ill had its drawbacks, like during bad days, people often lacked the understanding and sympathy I needed to get through the day. I would get called lazy for not taking the stairs, or taking the bus for only one or two stops. My attendance at university fell. People always questioned how ill I was if I ever appeared to get perks. But at least the ball was always in my court if I wanted to hide. People didn’t necessarily have to know my struggle unless I trusted them enough to tell them. I didn’t have to deal with people being nosy.

A month and a half before I turn 21, and Ankylosing Spondylitis puts me in a wheelchair.

Suddenly, that privacy I so neglected was gone. What happened to the basic human dignity and respect I was so sure I deserved? Also gone.

Don’t get me wrong, I love my wheelchair. I love the freedom it gives me to go about my daily life, without ending up tapping out in pain by the end of the day. It even has its perks: I get the best seats in concerts, I literally always have a seat in bars, clubs, buses, etc. And I can even be used as a battering ram in crowded spaces if needs be. Going downhill anywhere is a blast.

However, I cannot hide anymore. I’ve never been ashamed of my illnesses, AS being just one of many, but it was visible on my terms. My first day in a wheelchair was full of humiliation. Unwanted questions. Some questions I didn’t even know how to answer.

“What happened?”

Apparently “Nothing,” is not the correct answer. Not the answer they were looking for. People assume I was in a horrific car accident, or I fell off a horse. Something other than an ugly disease claiming my body.

I quickly became a tragedy. People saw a young person in a wheelchair and their conversations suddenly stopped dead, and their eyes turned to pity.

“Such a shame.”

People started introducing themselves to me out of pity. What’s my name? Am I having a good night? Would I like to dance? The sad truth is, that no-one had asked me to dance my whole life until I started to use the wheelchair. I could tell they came from a place of kindness, but pity can make a person feel so self-conscious, and at times, can irritate you. I started taking bets on how many people would come up to me like this.

I became a novelty.

I think what makes it worse is the lack of understanding and awareness about wheelchair users. People make certain assumptions about the abilities of wheelchair users, and how freeing a wheelchair can be for a person. A particular example from a pretty typical Saturday shopping trip sums up some basic misunderstanding. I was sat in my chair, dressed pretty casual, wearing my favourite boots that had a 2.5 inch stacked heel on them. Two women walked past me and muttered, “She clearly doesn’t need that wheelchair if she can wear heels like that.”

Bearing in mind I’m in a wheelchair. Not walking at all. Just think about that.

Lastly, no-one ever tried to help me when I was invisible. When I was invisible I could shout, scream, and beg for help, and nobody would seem to care. I got nothing. But now in the chair? I have to ask people not to help. Everyone is so eager to push me. I can be quite happily getting to my destination, one side of town to the other, and at least 5 people will offer to push me. Some people didn’t even ask, they just pushed. Rude.

A disabled person's "No" is still a "No."

Don’t get me wrong, it hasn’t all been bad. I’m on my way to becoming a professional athlete, I’m in the least pain I’ve ever been in, and I’m happy. Plus I can pull wheelies now, and carrying all my shopping home has never been easier.

But sometimes, just sometimes, I miss my invisibility.