Getting the diagnosis of Ehlers Danlos Syndrome is bittersweet. On one hand you’re like “FINALLY, I know what’s wrong with me. I knew it wasn’t all in my head!” Then there is this realisation that EDS is an incurable disease. This is your life now.
There is so much to process. It’s been a long, long journey and now you’ve come to the end of this road. But there is a new journey to begin. This journey will be just as hard as the last but, this time, you have knowledge and a whole community by your side to help you get to where you want to be.
Before you begin the second part of your journey, take a second to take it all in. Give yourself time to process the feelings and information. Take a trip or do whatever makes you happy. Switch off for awhile. Rest.
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One Mother's Experience of Life with Chronic Illness