Chronic Illness/Autoimmune

#IBDAdvocacyTag

Megan from The Front Butt Youtuber channel started the #IBDAdvocacyTag, so this week I am answering her five questions to help spread awareness & challenge you to answer them too!

What form of IBD do you have?

I have ulcerative colitis – specifically ulcerative pancolitis, meaning my entire colon is affected by the disease.

Why is IBD advocacy important?

IBD advocacy is important in helping to educate others to bring a better understanding.  A great example is with my team at work.  Though my colleagues were supportive off the bat, the more I tell them about IBD, my other diseases, and how the conditions affect me specifically, the more supportive they are.  The more awareness we can provide about IBD, the more understanding people can be.

Awareness and advocacy also can bring advancements in treatments and eventually a cure.  The medicine I am currently on for my ulcerative colitis was not available when I was first diagnosed.  Everyone’s disease is unique to them and the medication that could help someone else could still be in trials or not even thought of yet!  The more IBD patients speak out and participate in studies, the more research will be done leading to better treatments and the closer we will be to a cure.

Describe a socially awkward moment with IBD.

The first story that comes to mind occurred when I was working as a manager at a restaurant on my first shift after being hospitalized.  The General Manager of the restaurant and I were standing at the “seating chart” podium while guests were standing and sitting in the lobby waiting for tables to open up.  Loudly, he begins to ask me about my “irritable” bowel disease and how my “irritable” bowels were.  Super weird conversation since I wasn’t that comfortable with him, only made weirder by the ten other strangers in the lobby.  This was earlier in my disease when I wasn’t as comfortable discussing it as I am now, so I awkwardly let him know that the “I” stands for “inflammatory” and just kind of shrank in size and stature, not saying anything else.  Not my proudest advocacy moment, but it does lead into the next question…

What is a common stigma you run into?

The most common thing I run into is people thinking IBD is the same thing as IBS.  I’ve had people who have/had IBS tell me that theirs improved by eating better and managing stress, and I would be cured if I did that.  Though there can be food triggers or foods to avoid and stress doesn’t do anyone any favors, IBD is so much more than that.  As an autoimmune disease, IBD is our bodies attacking their own (what was at one time) healthy tissue.  When I encounter this misconception, I take the time to explain the differences and share my IBD story.

What do you want other people to know about IBD?

As I said earlier, everyone’s disease is unique and it affects people in different ways.  A treatment that worked for one person might not work for another.  There are different factors that go into everyone’s IBD symptoms and it is not fair to hold everyone to a single standard of what it looks like to have IBD.

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