I (Jesse) will be honest, learning how to advocate for myself is a skill I’ve been forced to learn over the past few months. This past year I decided to pursue to use of Biologic medication to help manage my ulcerative colitis, and it has not been an easy or smooth path! In fact, it’s been anything but. After countless phone calls to insurance companies, doctors, and patient assistance programs, I have been forced to learn how to advocate for myself and my health, because sometimes if you don’t do it, no one will. I’ve learned that there are so many components to being your own advocate and, because of that, I’ve decided to break my experience down into a two part series. In order to effectively advocate for yourself you need to know what you are advocating for. It sounds simple right? Wrong. I was surprised to learn how little I actually knew about my disease until I finally decided to do my own research.
I was 19 when I was first diagnosed with ulcerative colitis. I was still a kid and, whether I realized it or not, I didn’t want the responsibility of managing an autoimmune disease. So, I just did what everyone told me to do. I took the medicine prescribed by my doctor, I listened to the advice of my autoimmune blogger sister, and basically just did whatever she did. I never really took ownership of my disease, at least not until I had no other choice.
For the first five years of my autoimmune journey I utilized a combination of the Autoimmune Protocol Diet, healing lifestyle choices, and low-risk, low-reward medications to manage my ulcerative colitis. This protocol had been working well until this past year, where nothing I seemed to do could manage my flare symptoms. Eventually, I got to a point where I was steroid dependent, meaning I couldn’t go off corticosteroids (like prednisone) without all of my symptoms coming back. It was this point that I finally realized it was time to re-evaluate my healing methods and start looking into the other options that were available to me.
Now, I am planning to write another post regarding my medications decisions, so I will keep this part brief. When I came to this cross roads, I realized it was time to stop sticking my head in the sand and start taking ownership of my disease and my health. As I was driving home from an appointment with my gastroenterologist and having a long conversation with God, I suddenly realized that I had spent the past 5 years waiting to “get better”, to take that magic pill, or see that magic practitioner, or take “the” test to finally figure out what was wrong with me, fix it, and move on with my life. I was still trying to run away from my disease, pretending like it didn’t exist. I had never taken ownership of my disease and, therefore, my health and I realized it was high time I start doing just that.
We all walk our own journeys of acceptance regarding our health. I couldn’t begin advocating for myself, my body, and my health until I knew what I was advocating for. I could write several more posts about my journey to acceptance, but for now, let’s just focus on taking ownership. I firmly believe that knowledge is power! So the more you know about your own body and diagnosis, the more empowered you can be to make the best decisions for yourself!
Tips for How to Be Your Own Advocate
- Know Your Diagnosis. The more you know about your disease the more productive your conversations will be with healthcare professionals. Find books written by both professionals and patients about your specific disease. I really enjoyed The First Year: Crohn’s Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed by Jill Sklar, who is an IBD patient as well as researcher. She breaks down a new diagnosis detailing the emotional as well a clinical experience of a new patient. Knowing and understanding what is happening in your body will help you make more educated decisions with your healthcare team regarding medication, supplementation, diet, and lifestyle changes. It’s important to have a foundational understanding of your disease and diagnosis. However, still pay attention to your body. Two people with the same autoimmune disease can present very differently. So know what is true for YOUR body.
- Know Your Treatment Options. Again, do your own homework. Research the treatment options available to you, so you can ask questions of your healthcare team in order to determine which option is the best fit for you (this is where knowing and understanding your own body, like we talked about above, will help you even more!) Jill Sklar’s book also talks quite a bit about the varying treatment options available to patients with IBD (Inflammatory Bowel Disease). You can also read drug clinical trials, which are published for public knowledge. This information can either be found directly on the drug company’s website or through the U.S Food & Drug Administration here. Lastly, get connect with a community of people who share your diagnosis. Talk with them about what treatment options they are utilizing and what has worked and what hasn’t. (This is how I initially learned about my current biologic medication). Also, because autoimmunity is so individualized, it is important to read patient testimonials in order to better understand the varied response to medication side effects.