Being diagnosed with a rare disease is an event that no one ever expects in life and it completely turns your world upside down. In the beginning you are desperately searching for information, from doctors, specialists, the internet, support groups, anywhere and everywhere you can to try to secure some footing of understand of what is happening to your body and how to manage your condition.
In time, you will gain understanding of the biology of your illness, you will come to understand and yes, even be able to pronounce the long medical terminology that comes along with it. However, unlike your doctors and specialists, you will in time learn something they can not as well, and that is an inside view of what life is like with your illness. You will be granted a ‘back-stage’ pass to the daily life with your illness and you will continue to learn and grow as you go. You will also often continue to stretch your knowledge even beyond that of your specialists as they often see hundreds of patients with many other rare diseases, and they do not have the time to focus and specialize in one one particular disease like you do. In time, you will become your own expert, the expert of your disease, the expert of your body, and what your body needs to function it’s best in spite of your disease.
Be sure you lean in hard on that knowledge and listen to yourself as your own expert, and listen to the intuition you have spent years learning through your own suffering; that is an education no amount of $ can purchase.
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