Why I may decline the invite.

When you have a chronic illness you sometimes have to pick and choose what activities you can do. Even though we may want to say yes to every little event we are asked to, we know sometimes we just have to say no. It's not that we want to decline. It really is a matter … Continue reading Why I may decline the invite.

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What to say to a person that is newly diagnosed with a rare disorder.

I was diagnosed with my rare illness at 2. I was lucky to be diagnosed at such a young age. First and foremost, it probably saved my life, but it also saved me from knowing what life was like before a diagnosis. To me, Marfan syndrome was always known. I can’t remember a day I … Continue reading What to say to a person that is newly diagnosed with a rare disorder.