The prompt for day 25 of National Health Blog Post Month is to talk about how our goals as a patient, advocate and/or person have evolved. Even though I only started really opening up about my situation fairly recently and shared my story in the beginning of this September, I do feel like I have evolved quite a bit. When I first shared my story, I just sat down one day and didn’t get up until I was finished with the 13page word document (which was still only about ten percent of what I have been through). I was so fed up with keeping my life a secret and feeling like I had to be fake all of the time so on that day, I published what would be an enormous overview of my story and a great segway into this blog. It was also a huge turning point in my life.
When I first started writing, I was pretty scared. I didn’t know the reaction I would be met with. I didn’t know anything. All I knew in my heart was that I needed to get it all out of me and let the world know some of what I have been through and share with my loved ones the person I really am. I could no longer continue to live in hiding and feeling like I was constantly lying to avoid the truth of the sometimes gory details of my life. I never wanted to be viewed as a downer so it was always just easier to keep everything inside and only talk to my parents about what I was feeling. However, as I began sharing more of myself on this blog and I saw all of the support I was receiving, it made me a lot less afraid to be vulnerable and share some of my most intimate stories and secrets. I also found that when I open the door to talk about some of the more difficult topics, I am usually met with messages from other people who tell me that they have experienced something similar and thanking me for making them feel less alone.
When I was unable to have a voice of my own, all I wanted was to know I wasn’t alone because that is how I felt day in and day out for 12 years. I felt like no one had any idea what was going on in my head or my heart. I felt like I was the only one suffering so much emotionally (and physically obviously) from having such a severe case of ulcerative colitis and I felt like no one could relate to what I had been through and was still dealing with. When I was finally able to connect with fellow IBD advocates, hear their stories, see I wasn’t alone, see I had a community of people who understood what I was dealing with…my whole world and life changed. I began to see that who I am right now is okay. I may not be fine with exactly where I am at in life but I know that will come with time too. All of this writing and sharing has allowed me to understand myself and the world a lot better. It has also allowed me to become engrossed in a wonderful community of fellow bloggers and IBD advocates/patients which then I can use as reference. I see what I don’t like about others work and what I do find helpful and try to apply it to my writing. I have also realized that we all have our own styles of advocating as I wrote in this post here (insert different styles of advocating link here).
I have learned a tremendous amount from the short time that I have been advocating for IBD (ulcerative colitis and crohns disease). I have learned a lot from other people and I have figured a lot out about myself too. I find that now I am looking to do things in a larger sense. Before I was able to have a voice of my own, sharing so much of myself on this blog was a huge deal (and still is). Now, after doing it for a couple months and seeing all of the positive feedback I have received, it does make me start to think about taking it to the next level. I had always thought about doing something in patient advocacy and/or social work and those thoughts do creep in now and then. I want to turn all of my negative experiences into helping those suffering and I find myself looking at this as more of a possible career path, as opposed to initially when I simply needed to expunge all of the emotions that I had kept inside for so long.