Working with your Healthcare team
Being a successful caregiver doesn’t mean you need to have all the answers or become an expert in TSC. You can empower yourself by clearly advocating your understanding of TSC and what you need to better understand, risk and benefit of treatment, short and long term outlook and how to prepare and balancing insurer- or pharmacy-based requirements.
Unfortunately, not every situation is ideal, and stress can lead to strong emotions. During those times it is important to focus on the goal you need to accomplish. Be realistic given the situation and options available to help redirect and find a solution to the current problem. Always remain calm when situations have escalated to anger and frustration. Most institutions and clinics have patient advocates. If you do not feel comfortable or agree with a treatment plan, you can always request to speak to an advocate prior to leaving (this is even true if you are in the emergency department!).