What form of IBD do you have?
On paper I have Ulcerative Colitis but my doctor has mentioned a couple of times that I probably have Inderterminate Colitis. So that’s pretty much what I identify as. There also isn’t a Inderterminate Colitis diagnostic code so that doesn’t help either. There was also that one time I had a pathology report come back and say Crohn’s Disease 🤷♀️ And the Humira is currently working fairly well and there is mucosal healing in my colon and rectum, so it’s hard to say for sure which IBD I have.
But at the same time there is a lot of speculation in the GI field that IBD is a spectrum disease. The most important thing is that I like my GI doctor, the medications are working and we know where my disease is most active.
Why is IBD advocacy so important?
So people know that they are not alone. Having a chronic disease can feel so isolating when you are first diagnosed. It is so helpful to meet people who know what you’re going through. And can help you navigate a very hard time in your life.
Describe a socially awkward moment with IBD.
Oh where to begin?
There was this one time on Facebook that I got told that I needed to read the healing word of God and pray more to cure myself.
Which was extremely frustrating because I’m not an avid Christian (I’m more or less agnostic) and my faith has nothing to do with my illness. Shit happens and I somehow got this incurable disease through no fault of my own. And praying to God to get healed isn’t going to cure me. Some scientist some day will find a cure and that will be what I need. Will it be through delivine intervetion? Who knows!
But telling someone that they need to read the bible more and pray more just blames the person who got ill and victimizes them. People who are chronically ill need compassion and empathy. Not someone to tell them where they went wrong in life.
What common stigma do you run into?
That it’s not that serious of a disease. That it just makes you poop. That it’s just a stomach ache and some diarrhea. That I don’t look sick.
All of these stigmas are so incredibly frustrating. There are people who have died from complications of this disease. IBD is so much more than pooping and a stomach ache. And I don’t look sick because I’m good at faking being well. And it’s my colon and rectum that are affected, not my face.
These stigmas are just a few of the very important reasons we need to raise awareness for IBD.
What do you want other people to know about IBD?
So many things.
That at times it is a hard disease to live with. But along the way you will meet some pretty incredible people who will become some of your best friends who will be there for you no matter what. If you are able I highly recommend going to a retreat for people with IBD. It will be an amazing experience for you and you won’t regret it.
That this disease affects me in so many ways. And just because I don’t look sick, doesn’t mean that I’m well.
The more I work and the more I do the more tired I get. But it’s not the same type of tired as everyone else. I fight my body every single day. It’s exhausting.
Until next time!