I have an invisiable illness!

“But you don’t look sick!”…. ah yes, five words anyone with an invisible illness will hear all the time and technically they are right, we don’t look sick. On the outside we may appear in perfect health, but our insides tell a different story.

Today we will be discussing Crohn’s Disease. Crohn’s Disease is an autoimmune disease that falls under Inflammatory bowel disease (IBD). Another disease under IBD is Ulcerative Colitis. This disease will not be discussed as I do not suffer from this disease and do not want to give out any incorrect information.

I have Crohn’s Disease.

Crohn’s Disease is a bowel disease that is located in your intestines but can appear anyway in the digestive system. It causes horrible abdominal pain, diarrhea, weight loss/gain, nausea and vomiting.

I have been sick since I was 12 years old (I’m 21 now) and was officially diagnosed in 2011 after numerous doctors and hospitals and blood tests and procedures. There was another major obstacle that delayed my diagnosis. This was getting people to actually believe I was sick.

It took months and years for doctors to take me seriously. Because I started getting sick in my first year of high school, the doctors and my school had decided that I wasn’t sick, just faking it. Little did they know that the majority of people diagnosed with Crohn’s Disease often start showing symptoms in their pre-teens. Doctors wouldn’t pursue any further tests. Finally there was a hospital that helped me. The Royal Children’s Hospital in Melbourne. After one colonoscopy and one MRI, I was diagnosed with Crohn’s Disease, located in the small bowel. We finally had an answer.

It should be stressed that you can have treatment for Crohn’s Disease but there is no cure. I will be on medication for the rest of my life. I may have periods in my life where I have no symptoms but the disease will always be there. Treatment is used to try minimize the severity of the symptoms. Surgery is also used in some cases. Along with the disease itself, sufferers can also suffer constant malnutrition because it is hard for us to absorb nutrition, we will always need to take vitamins as we can also suffer from vitamin deficiencies, we may need b12 injections, iron infusions, the list goes on.

One problem with Crohn’s Disease is that it is often referred to as a ‘bathroom disease’ and that there is such as stigma around having a ‘poop disease’. It can be embarrassing to talk about. People may not be comfortable hearing about this disease. We were told as children that bathroom talk isn’t for the dinner table. But what do you do when a big part of your life revolves around what happens in that bathroom?

It’s not uncommon for someone to say they relate to me because they have experienced gastro a few times. We often get people coming to us with suggestions of gluten free food or taking alternative medications and that they know a friend who knows a friend who had (emphasis on the ‘had’) Crohn’s Disease but is now cured because she changed her diet. It’s frustrating. It’s hard to be taken seriously when there are so many misconceptions out there that suggest that the disease is curable with a special diet.

Yes there are certain foods that can trigger a reaction, for example popcorn for me can cause extreme pain and diarrhea so I avoid it. But every sufferer is different. One food that may be fine for me, may be a trigger for someone else. I can eat spaghetti on Monday night and be fine. I can then eat the exact same meal four days later and be on the toilet all night.

The point of this blog post is to stress that just because someone appears fine on the outside, doesn’t mean they aren’t suffering on the inside. I can disguise my pain and discomfort very well. Often I’ll be in severe pain but looking at me you wouldn’t be able to tell.

Just because someone looks fine doesn’t mean they are.

I also want to mention that having an invisible illness doesn’t stop you from living your life. I had to leave high school due to this disease but instead of giving up and dropping out, I completed my HSC online and now completing my Bachelor’s Degree of Criminology and Criminal Justice online.

Don’t let this disease, or any illness, stop you from travelling or pursing your dreams. Sure there will be obstacles along the way, it may be harder or take longer but it will be worth it.

I leave with a quote I think anyone with an invisible illness can relate to:

“People assume you aren’t sick
unless they see the sickness on your skin
like scars forming a map of all the ways you’re hurting.

My heart is a prison of Have you tried?
Have you tried exercising? Have you tried eating better?
Have you tried not being sad, not being sick?
Have you tried being more like me?
Have you tried shutting up?

Yes, I have tried. Yes, I am still trying,
and yes, I am still sick.

Sometimes monsters are invisible, and
sometimes demons attack you from the inside.
Just because you cannot see the claws and the teeth
does not mean they aren’t ripping through me.
Pain does not need to be seen to be felt.

Telling me there is no problem
won’t solve the problem.

This is not how miracles are born.
This is not how sickness works.”
Emm Roy, The First Step

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