We Advocate For What We Need(ed)

Most advocates are advocates for a reason. They are a wealth of knowledge and experience and usually have incredible passion for the fight. They want to use what they have been through to help others. The majority of people who are advocating for a disease or a cause do so with only the best intentions. They want to raise awareness, get funds, provide support for patients and caregivers, etc.

I wrote a post a while ago that was about how there are different foundations and support pages/groups for a reason, which you can read here. It is wonderful to have a variety of people advocating for inflammatory bowel disease because patients are going to click with different people. They are going to hold some advocates in high regard, and not be able to relate to others for whatever reason.

I wanted to say something that has been festering for a while. I don’t believe there is such thing as being a positive or negative advocate. We all are a product of what we have been through. We all react to styles of videos, blog posts, status updates, tweets, etc differently because of something we have experienced in our lives.  We are triggered by certain things for a reason and we respond positively to things for a reason as well.

All of the people in my life (both with IBD and without) are a product of their experiences. I would be a very different person now if I hadn’t been through what I have. We all would.

We all take what we need and what we have been lacking in many ways and use it in our advocacy. I couldn’t find a website, blog post, or video that didn’t leave me feeling like I was the only person going through terrible things with my IBD. So when I set out to start this blog, I did it with the mentality of “what would I want to read if it was me?” And as someone who was desperate to know my emotions were validated, my goal has been to make sure that those people who are struggling (mentally, physically, or socially) know that they were NOT ALONE.

I needed to become friends with other IBDers. I needed to know that all my guilt, anger, frustration, and feelings of helplessness were understandable. I thankfully had my parents who didn’t treat me like a nut job because they were the only people in my life who knew everything. They were there through every disappointment, every good time, every heartache, every test, every doctors’ appointment, every hospitalization, every surgery, every everything. There is not another person on this earth that I felt understood what it was like to go through so much. In my mind, there wasn’t anyone else who had the capability of understanding what it feels like to work so hard and have things taken away because of reasons outside of your control.

Until I watched a video of Sara Ringer

I believe I have stated this before but my first time seeing one of her videos, I was utterly blown away. I watched it about 10 times before I brought my laptop down to my dad so he could see. His eyes widened and just said “that is you. Right there, this girl understands and seems to have been there.”

And he was right.

That day changed my life. That day gave me hope that there were other people who understood me and what my life was like. So when I started advocating on my own, there was no way in the world I could do something that would potentially make others feel isolated. There was no way I wasn’t going to talk about everything… and think to myself “how would someone reading this from the hospital feel? Would this be helpful? Would my work make them feel like there was hope and an end in sight? Would I be talking about things that very sick people couldn’t participate in thus making them feel more alone than ever?”

I have come across a wide range of advocates, foundations, support pages, and communities meant to raise awareness and help those people who suffer from Crohns disease and ulcerative colitis. They all serve a different purpose. I may not align with all of them but if you truly understand life, you will see that the person behind the blog, foundation, or support page is usually sending a message that they wish they had themselves.

For me, I needed to know I wasn’t alone and will continue to do everything in my power to show others that they don’t have to feel the isolation that I felt. It isn’t about telling all my awful stories, and it isn’t about being negative at all. It is about being real. I don’t feel a need to go on and on about the good things happening in my life now because this isn’t the venue for it (in my opinion.) If I was to talk nonstop about all the amazing things I was capable of doing, that isn’t helping those who are struggling to get out of bed or stay out of the hospital. And if I was to talk about all of the horrible things I have been through, most of you would get a little tired of reading me complain.

I also look at the education and awareness part when I advocate. I want someone to read my blog or see the work I do and have more of an understanding of inflammatory bowel disease. A real, true understanding and not just the superficial things anyone can read on the internet. In order for me to do that, I feel a need in some ways to discuss how much IBD has changed me.

As I began to think more about that, I realized that I have such a huge desire to share the true reality of Crohns disease and Ulcerative Colitis because 99percent of the world doesn’t get it. You also never see an IBD patient at their worst so it is up to us to let people know what really goes on behind closed doors.

We all handle things differently. As long as the information is accurate, there is no right or wrong way to advocate. You do what works for you and the people who are like-minded will respond positively to your efforts. Those who don’t for some reason, will move on to find the support that is best for them.

Stick to your core values because you never know whose life you are touching with your individual work.

  • Jodi

    You are a true advocate. You have enlightened and inspired me with your words. I am sure there are MANY who feel the same way. Keep up the great work.