ONCE UPON A GENE - EPISODE 032 - Beyond Quarantine: Acceptance, Empathy and a Better Normal

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Dan DeFabio, Co-Founder of Disorder: The Rare Disease Film Festival is joining me again. He recently wrote a blog post about the connection the masses now have to the rare disease community surrounding the quarantine. A lot of families have dealt with these aspects of sheltering in and it hasn't been as unfamiliar as it's been for others. In this episode, I'm chatting with Dan about how the Covid-19 quarantine hasn't felt that different for families affected by this on a day-in and day-out basis. The isolation is familiar and real. Quarantining isn't shocking and isn’t unrelatable.

EPISODE HIGHLIGHTS

You wrote a blog post that really resonated with me and I'd like to talk about that. What sparked that idea?

In the early days of the shutdown, a friend posted how she was struggling and didn't know if she could get through the day and the next day. I started thinking if something in the rare disease community had prepared me for this and I realized this was new territory for everybody, but it's a little less new for anyone who has faced fatal illness, chronic illness or rare disease. Rare disease families have in some way adjusted their mental space to this reality in advance.

Rose Reif said in a recent episode that the way to get through this is to lower the bar. I think it's great that you've become a lifeline to those who haven't been exposed to so much uncertainty. The way you've done this in the blog is a beautiful transformation.

By now, we've all gotten used to talking about flattening the curve, and flattening the number of cases. In the rare disease mindset experience, we have another curve we've flattened, the fear of a disease or of a death. We didn't just start facing that in February 2020. We've faced it from our diagnosis day. For me, that's 10 years of the same amount of fear, spread out over 10 years. In the article, I referred to the Kübler grief cycle. I think a lot of people are stuck in anger or denial, but maybe we can come out of this with more acceptance and more of the positive attributes. 

What has changed with everyone in quarantine that you hope stays around when things go back to normal?

People have more time on their hands, they're maybe reflecting and reevaluating. Stress shows weaknesses, so what's not working we're able to better see. If we don't snap back fast, we can maybe take time to look at things differently and question how different they should be. We need to look at advantages and disadvantages and everyone equally. I hope all lives are worth saving and that leads to a better healthcare system where the medicine you can afford isn't the only medicine you get and where we take care of everybody.

I feel like people have been forced to open up lately, that they're more vulnerable and I've seen empathy and understanding happening. 

The rare disease club is a club no one wants to be a part of, but once you're in it you're in touch with people doing amazing things and they're inspiring people. Tragedy can bring out the best in people. In the midst of a global tragedy, it's bringing out the best of people and you're finding a commonality where we're all feared for our life or a loved one's life. A lot of compassion and generosity can come out of that.

What further insight can you leave us with?

Try to be okay with this. As it feels the worst, it won't last long. There are waves of bad times and not-so-bad times. Realize what you can let go of and be okay with it. 

LINKS AND RESOURCES MENTIONED

We Are All Rare Disease Families Now

How Parenting a Dying Child Changed All My Expectations

EPISODE 027 - Therapy Check-in with Rose Reif

Dan DeFabio Facebook

The Home Office

Your Only is My Everything - A Short Film about EDS Warriors

Disorder: The Rare Disease Film Festival

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