Hi, my name is Nicole and at the age of sixteen I was diagnosed with Crohn’s disease. Over the past 25 years I have learned the importance of being a patient advocate. Learning how to advocate for yourself helps you to understand what your disease space is, and deciding who or what resources are needed to support you manage your health and quality of life. One of the main factors to managing your health is building a team of healthcare providers that you can communicate with and who are able to work together to meet your health needs.
My communication with my healthcare providers is extremely important. I appreciate the time that a doctor provides to listen and address my questions and concerns about managing my health. This level of care allows me to feel comfortable with expressing myself and building a relationship with everyone that is part of my healthcare team. Unfortunately, sometimes there comes a point where you may need a second opinion or even have to make the decision to change providers if those needs are not being met. This decision can come as quite a challenge, especially if you have been with a particular doctor for a long period of time. The idea of having to search for someone new can be stressful and the lack of resources in that field could present even more challenges. However, as a patient it is important that you are comfortable with whoever is part of managing your health. The transition may take some time depending on the patient’s situation and the process of going through different medical tests or procedures to get the new health provider up to speed.
Living with a chronic unpredictable disease has several challenges, so trying to manage both your symptoms and healthcare team at once was hard for me to transition through. The anxiety and stress from switching doctors and combating my disease left me in a tough space, but my ultimate goal is to be able to fulfill a healthy quality of life as much as possible. This level of care for me would mean having a level of communication that is consistent and effective to my daily needs. I have been able to have the majority of my healthcare providers for a long period of time, so navigating through this process would be new for me. I knew that having any level of support would help point me in the right direction to make this transition less stressful than it already was.
Being part of a support group like Color of Crohn’s and Chronic Illness has not only allowed me to become more proactive about my health, but it has also made me feel welcomed by a community who looks like me for the first time in my entire journey of living with Crohn’s. In the past this decision would have been something that I would have dragged out or possibly turned away from, because of feeling discouraged or stressed out of the challenges that it can bring. I am thankful to be at a point in my journey where I can turn to a community that provides support and resources to help others like myself get through these difficult tasks, like finding a new doctor who was able to provide me the additional care I needed.
Nicole R. Watson