The excerpt below is from our 2022 webinar “Strengths and Challenges for Siblings of Individuals with Duchenne” with guest speaker Emily Holl. Emily is the Director of the Sibling Support Project. Click here to listen to the full podcast.
Siblings: Over-Identification & Isolation
Barbara Sourkes has done a lot of work writing about the experiences of terminally ill children and their families. She wrote a book called Armfuls of Time, which is just a beautiful book and it talks about her work with children. The title comes from a child who said, “I just wish I had armfuls of time” knowing that their illness was terminal.
And she writes about siblings as well…
Over-Identification
One thing that strikes me in Sourkes’ work is the parallels between the sibling experience and the experience of the child with the diagnosis.
Siblings often identify to an extreme extent with their sibling with the diagnosis. I think of it like empathy on steroids – it’s like they are really starting to embody all of the symptoms and struggles of the child who’s affected. Some may even begin worrying that they too will develop this illness.
Lindy: This point is so pertinent for our community since Duchenne is largely an inherited disease. If you’ve got a son who is diagnosed with Duchenne, just about everyone in the family shares the same nagging thought: do any of the other children have it, too?
It gets even murkier when it comes to daughters in Duchenne families. Because of the obstacles with insurance, many times parents aren’t allowed to test their daughters for the mutation until they’re 16 or 18 or 21. I can see how behaviors from over-identifying with their diagnosed sibling could really cause a lot of confusion for daughters and families as a whole.
Emily Holl: And I think that’s why it’s so important to share information about it. Like, “Well, you may or may not like that we don’t know yet. There will be a time when we can find out. In the meantime, we want you to share your feelings about it, to not feel this worry by yourself and also not always assume the worst either. Let’s have hope.”
I always say information is power, but it’s also complicated. Because depending on what the results of that testing are, you know that decisions need to be made and you know it’s not an easy answer all the time.
Isolation
Isolation… this is a big one.
I think for any parent who is being initiated into “the club that you never wanted to be in”, once you’re there, you’re pretty glad you found this village, right? Because it can feel really isolating and lonely, especially once you first get that diagnosis. You might feel like you’re the only family on Earth who’s struggling with this because you might not know other families – especially right away.
For siblings, these feelings of isolation can be really really, really intense:
- Often, it’s the parents who tend to find their village and their community first and siblings may just sort of be along for the ride. So it’s really important to be intentional about making sure siblings also have opportunities to meet other siblings in the Duchenne community.
- We need to recognize that siblings feel not only isolated from peers and from the general community, but also maybe even from their own sibling. Especially depending on if the sibling maybe uses a different communication method.
- There may even be some sort of distance or isolation from their parents. For example, siblings may not want to add to the perceived burden that their parents are already experiencing. So they sort of decide, “hey, I’m not going to bring home any news that’s not good. I’m going to compartmentalize all the not so good things and I’m going to keep them to myself. I’m not going to share them with my parents because I don’t want to add to the burden.” That mindset can feel pretty isolating as well.
- And then, of course, siblings experience isolation from the treatment process of the disease and from the professionals and from information about the disease like we talked about before.
More to Consider