Check out what Sarah has to say about her health activism and the advice she’d give to patients beginning their Health Activism.
1. Why did you become a Health Activist? Tell us your health activist story.
I started Inflamed & Untamed in 2011 after six weeks in the hospital, having to stop work and school again. I didn’t have anything to do to fill my time and I became depressed alone at home feeling worthless and like nothing I did had any purpose. I opened my computer and recorded my first video blog and uploaded it to YouTube. From there I started writing blogs and doing videos frequently not expecting it to go anywhere, but it blew up pretty fast! I felt like I had a real purpose after that. 🙂
I became a Health Activist to help other patients feel like someone else out there not only understood them, but could be a voice for them. I really wanted to help others handle some of the things I had to go through alone growing up with Crohn’s disease like acceptance, the mental health side of things, and just all the ups and downs that come with it. Additionally I love to educate patients about Inflammatory Bowel Disease with accurate information and help clear up all the misconceptions out there about IBD – like it’s the same thing as IBS.
2. What are your goals for Health Activism in 2015?
I would like to book a few public speaking roles and continue to attend medical conferences and patients support events around the country. In addition to that I’d like to get some new equipment to make the quality of my videos better and I have a few new projects I am hoping to start pretty soon like writing my book and hosting events for patients with Crohn’s disease and ulcerative colitis with my boyfriend, Dan, who also has Crohn’s disease and is a Health Activist.
3. What awareness event or effort are you most excited about in your condition?
Camp Oasis! It’s a summer camp for children and teens who have Crohn’s disease or ulcerative colitis and I have been a counselor there for the last 7 years. It’s my favorite week of the entire year so I can’t wait for that.
4. If you could tell others a few things about your health condition and your community, what would you want them to know?
Well first, I’d like others to know that IBD (Crohn’s disease and ulcerative colitis) are systemic diseases. That means that it doesn’t just affect one organ or part of the body but rather the entire body. Aside from the disease affecting the digestive tract, almost every system can be involved. Usually the eyes, skin, joints, kidneys, liver biliary tracts, and .vascular system are the most common sites of systemic IBD.
Second, I use “IBD” when talking about my Crohn’s disease. IBD stands for Inflammatory Bowel Disease and Crohn’s disease is one type of Inflammatory Bowel Disease. Ulcerative colitis is the other most well known type of IBD. One of the biggest mistakes people make is associating IBD with IBS even though they are very different. IBS is irritable bowel syndrome and IBD is inflammatory bowel disease. One = a syndrome. The other = a disease. Though IBS is uncomfortable to live with, it isn’t a chronic disease that violently attacks and damages your digestive tract. People with IBD can get perforated bowels, tunnels from their bowel to another organ or outside of the body called fistulas, and they can lose a lot of blood due to the inflammation and bleeding in the GI tract. People with IBS have completely normal healthy looking bowels but they function wrong.
5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?
- Take it slow. If you want to become a Health Activist in your community start with educating yourself first so that when you talk about your condition you are doing it accurately. Everyone can share their story but if you want to write out information about your health condition, make sure you are getting it right. People are looking at you as a patient expert!
- Stay humble, don’t spam pages with links, and be yourself. I think it’s also important to find your niche. You can’t do it all! There are hundreds of pages, blogs, groups, etc. in my community so another one just gets lost in the sea. Unless you do something different or do something that has already been done better, it’s not going to work.
- Have fun with it and always remember why you started. To be a good health activist requires a lot of passion and dedication and you have to love doing it. Above all, I think about why I started doing this every day, and that was to help other patients. I truly do care about the patients who look to me as a source of information or support. I help them, but they also help me! 🙂