Establishing Your Support System

Below is an excerpt from our livestream “Supporting the Duchenne Family” with guest Dr. Molly Colvin. Dr. Colvin is Director of Massachusetts General Hospital’s Learning and Emotional Assessment Program (LEAP) and Assistant Professor of Psychology at Harvard Medical School. Click here to listen to the podcast.

Establishing Your Support System

Lindy: Now that we’ve painted a pretty solid picture of what’s happening in the nuclear family, let’s delve into the issue of family support.

Over and over and over in the community, I hear how either 1) extended family members and friends disappear or 2) there’s this rush of support and family and friends say, “We’re going to do this together!”And after a bit, that all slowly goes away.

So let’s discuss how to get that support? How do we find somebody to come to our house so we can sit on the front porch with our spouse and reconnect? How do we find that person who understands that if my kid is moving around the house in socks, we might be going to the hospital later?

Local Support

Dr. Colvin: Right, I think what you’re describing is really common and it’s really hard. It certainly compounds the grief period. It also adds some risk around developing anxiety and depression, because you need the social support and you’re not getting it.

So I think part of it is that we don’t always do a great job in our culture about being explicit and asking for help.

You know, years ago, the fabric of the immediate and extended family was able to support you through hard times. Those were the people that are more likely to be moving in and out of your house regardless of whether it’s clean or not. Those are the people who know your house well enough that they could step in for short periods if needed.

Then in the 20th century, a lot of American families started moving away from their immediate families. Their parents didn’t live down the street anymore. Maybe they didn’t even live in the same state.

And with the absence of that local extended family, it’s actually really important to mobilize what you need. And it may be that you say to your best friend, “It really would mean a lot to me if you’d come over every couple weeks and just sit with me from 9:00 to 10:00 and we can watch a bad TV show or talk about something.” Or you could even have a book club with friends where you’re sort of talking about the book.

There need to be touch points for you in your community so you don’t lose your community and so you can practice saying, “I need this” for the small things. Then it’s ultimately easier to say something bigger like, “Could you please pick up my other child today because we have an appointment downtown?”

And I think all of those things are hard to do if you’re not practicing them regularly. I do think that most of the time other people – your good friends and your community – are willing to connect with you like that.

A lot of people find this also through community organizations, including church and faith-based organizations. I think a lot of people find that it’s easier because it’s more normalized within those settings to say, “I need this right now” and for somebody to step in and to hold that space.

However you define it and however you access it, I think it’s important to have your tribe of people who are in those supporting roles, so that you feel like there’s a buffer, especially when the emergencies happen.

Online Support

Lindy: You know, I also hear a lot of the younger parents – myself included – chatting online, seeking validation like, “Am I crazy? I must be crazy. No one seems to understand the magnitude of this. Can someone please tell me if I am crazy?”

So, one of the things I love about our community is that we are tight knit. We are just tight. It is common to read something along the lines of “I’ve never met you and I don’t know you, but you can PM me anytime you need to and I will walk you through that crying spell that you’re having.”

You know, it’s just amazing. Most definitely we need that local physical help and I also find within our community that just a little bit of validating or company from others goes a long way for our mental health.

Dr. Colvin: Yeah and to know that the support is actually there. It sort of feels like there’s somebody in your corner, even if you’re not talking to them all the time.