Staying Informed

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Become an Ambassador for your own health. 

To become an ambassador for your own health, it’s imperative that you take the time to learn about your own disease. You don’t need to have any sort of formal scientific education to improve your understanding of your disease and how it is treated, you need only have a willingness to learn and someone to point you in the right direction. There are plenty of tools and resources available to help you get started on this journey of discovery and assist you along the way.

Even a bit of knowledge about your health can help you navigate many different facets of your journey. You might be able to go into your next healthcare appointment as an active participant, prepared with pertinent questions, the exploration of which might lead your care in new directions. You may be able to better explain your health situation to family, friends, co-workers, or others within your social circle. And you may find that a bit more knowledge helps you to stop worrying about the unknown and find peace.

A friendly warning:

Knowledge is important when it comes to long-term disease management and recovery. However, there is a tipping point when information hurts more than it helps. Too much or the wrong kind of information has the power to overwhelm and cause feelings of anxiety and depression, especially if you have been newly diagnosed with a long-term disease. Protect your mental and emotional health: if the amount or content of the information you are finding is causing you to become stressed, anxious, or depressed: step away. Take part in an activity that brings you joy and peace. Remember, you are the same person you were before your diagnosis; a diagnosis does not define you, nor will the information you find online shape who you become. Maintaining a positive attitude and supporting your mental health is just as important – if not more so – than being informed on every aspect of your long-term illness. 

Read more: Performing Research