The tornado beneath the surface

Living with chronic illness

By Lauren Paulsen, Contributor

When people look at me, they see an average teenage girl who looks young for her age. What they don’t know is that beneath that surface lies a tornado.

I have a rare auto immune disease called Eosinophilic Gastroenteritis. One person per million has it—that’s how rare it is. I was the second person to be diagnosed with it in BC. This is called an “orphan illness.” Unfortunately for us “orphans,” because the illness is so rare, drug companies won’t try and treat us—because there is no profit in it, there is no incentive for them to find a treatment. Because of this, I have been sick for most of my life.

To give an idea of what life is like for me, I’m going to use something called the Spoon Theory. This theory states that everyone has spoons, each one representing the energy and ability to do something in a day. Getting dressed uses up a spoon. Brushing your teeth uses up a spoon. We do all these little things without really taking into consideration the amount of energy we are using to accomplish them. The reason people don’t think about it is because they have enough spoons that they don’t have to worry about running out.

I do not.

In fact, I have such a limited amount of spoons that my “normal” health is at the level of barely functional. I have to be careful about what to use my spoons on, or I will run out and won’t be able to function for several days.

Therefore, at my “barely-functioning” level, I am only able to do the necessities. What I mean by this is that when I am attending college, it uses up a lot of my spoons going every day, so I cannot go out and do other things that would be more fun. If I did, I wouldn’t be able to go to college. So I have to use my spoons wisely.

But even when I do my best to conserve my energy, I am still sick a lot of the time for various reasons. The main one being viruses. I am immune-compromised, meaning my immune system has a hard time fighting off invaders, because of the medications I take to keep my illness in check. There are germs and bugs everywhere, and it is especially bad during the fall and winter. Unfortunately, this is also when college is. I am essentially a magnet for these bugs and viruses, and when I’ve caught one, I am far sicker than most people. Something that takes a “normal” person two days to get over can take me two weeks to get over. I’m serious—there’s no exaggeration here.

I have been living like this for many years now, and I have basically accepted it as my “normal.” There are tons of things I’d like to do, but I don’t have enough spoons for. So I miss out. This is what it is like for people with chronic illness.  Even though you can’t see anything wrong with us, that doesn’t mean there isn’t.