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Adjusting to a 'New Normal' Is Not Novel to Me As a Rare Disease Warrior

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It’s hard not to start feeling hopeless right now. Summer will arrive soon and we still find ourselves in the midst of the pandemic.

It feels like we are waiting for life to return to our normal. However, if we are honest with ourselves, our reality will never be the same — so waiting for its return is becoming particularly frustrating.

As we all watch the world slowly re-open, it feels impossible to know how to move forward in our new reality. So much has changed, but somehow it feels like nothing has at all — we still do not have vaccines or definitive treatment options, but there are now hospital beds and ventilators when people get sick.

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