You’re not normal

Georgina Banks on life as a chronically ill teenager

If I was told one thing before I got sick, I wish it was that I was never going to be normal again. I was never going to fit in with everyone else. I was an exception.

Chronic illness destroys your life. You start to forget who you once were. When you remember something about your past, it doesn’t feel like it was your life. It’s like watching a movie.

As a healthy person, you’re not friends with everyone in your school year or at work, but you are still a part of that community. Chronic illness strips you of that. A lot of chronically ill people have to stop going to school or work. It makes you physically incapable of going. It’s impossible.

When I was in school, I would wish for the lessons to be over, to go home. Now, I wish I could go to college, to get a job. I wish I could be normal again. But what use is wishing when there’s no way any of that is possible?

“You're not normal

Some students pretend to be sick to get the day off school. Well, as a person with a chronic illness, I pretend to be well. I pretend to be well whenever I see my friends. I pretend to be well whenever I see my family. I pretend to feel my age, even though I feel like I’ve lived a whole life. I’m only 17.

When you have a chronic illness, you can’t do everything a healthy person your age can do. This may be going to school or work, but it’s also going out with friends, going on a date, or going out to see family. Even if you can go out, it takes a lot of effort that can cause a flare, which tends to put you off trying. Just getting dressed can exhaust you, cause you to run out of spoons and be bed-bound for days. So can having a shower or doing some chores. How can you be expected to go out with friends or family when you can’t even wash yourself without having to have a lie down after? You can’t and it’s ridiculous for anyone to assume otherwise.

I tried to live like everyone around me for such a long time, but that’s not a healthy way to live. Not physically and definitely not mentally.

There’s no such thing as a normal life for anyone, less so when you have a chronic illness. How your life is going to progress is unknown and unexpected. There’s just no way of knowing what will happen from one second to the next. Your symptoms could be manageable, but suddenly you’re in agony and feel like you could throw up at any second.

This becomes your new normal. You get used to it, but that doesn’t make it any less horrible. You just learn to live with it and make the most of what you have.

How can ‘ableds’ improve a ‘spoonie’s’ life?

First of all, let me just clarify that an abled is the opposite of a spoonie – they’re not disabled, and they don’t have a chronic illness.

Ableds can significantly improve the experience a person has with their chronic illness by treating them as human. We are NOT our illness. We are people, the same as you, who just happen to be chronically ill. We still want to spend time with you, but we’re unable to go out and see you. Why don’t you come and see us? Even if we just lie in bed and watch TV, we’ll still be spending time together. That’s what we want.

You can also believe us. Nobody wants to be sick. Having to stay at home is not a holiday. We’re forced to and we don’t have fun. We’re plagued with these awful illnesses and to have people not believe us makes our lives so much more difficult. If you see us standing up out of a wheelchair, we are not faking it. Even if you see us laughing, we are still in pain.

Georgina blogs on about her experiences of chronic illness, health management and how to support a chronically ill loved one. Living with an as yet undiagnosed chronic illness has left Georgina housebound, however she still loves photography and playing music. When well enough she hopes to become a doctor.

This expanded post include an extract from Georgina’s eBook.

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