Learning as much as you can about your diagnosis is the first step toward empowering yourself to take control of your life and make decisions that will help you live well with tuberous sclerosis complex (TSC).
It is normal to be hesitant or resistant to learning how the disorder will progress and impact your life.
But there are benefits:
- You may experience a stronger connection to your emotions and identity.
- Knowledge about TSC can provide you the confidence to make important decisions about how you choose to live your life and plan for your future.
As you begin learning about your diagnosis, there may be information that will be difficult for you to deal with—and that’s OK. Learn about the disorder and how it will affect you and your family at your own pace. Set realistic expectations about the information you are able to process. Then go back to your research efforts as often as you need.
Consider these important questions to ask yourself as you prepare to learn about the disorder:
- What are the most important questions about the disorder that I need answered right now?
- How much information am I able to cope with at this time?
- How much do I want to learn about the disorder right now?
- What resources are available to help me learn about my diagnosis?
- Are there resources available to me in the community where I live?
There is an abundance of information available online, and it may have been one of the first places you turned to after learning of your diagnosis. To help ensure you get the most credible, reliable, and objective information, use well-respected websites. This website may be a good source for you—click here.