Northeast

Undiagnosed

During our D.C. stop we met with a 45 year old woman in a cute café outside the city. What was especially interesting about her family’s story is that her brother has remained undiagnosed despite a long list of social and language related difficulties. Granted, her brother is in his late 40s now and diagnosing is different now than it was then, but she and her family have dealt with him his whole life without a diagnosis or the medical “advantages” that go along with having a name for the problem. She speculates that her brother probably has some form of Asperger’s, although she thinks he wouldn’t have been put on the Autistic Spectrum when he was growing up because he didn’t appear severe enough, especially since Asperger's was added to the spectrum only recently. She described her brother for us, explaining that he lacks many social and hygienic skills, suffers from speech and language issues, and currently works the night shift stacking shelves at an Office Depot equivalent. She said he never really had any friends but he is currently married to his second wife. He has three children. “If you want to call that independent, you can, because he’s not in a group home,” she told us, although it was clear that she did not agree. We asked her about her relationship with him. She certainly had a lot to say but, just like many other siblings we have spoken with, she described them as personal issues that she, herself, was dealing with, not the two of them. She depicted a lot of anger towards him because he has put so much stress on her aging parents, one of whom still works 2 jobs even though he is in his seventies. “There are definitely times when he has learned to manipulate my parents.. that just infuriates me.” Yet despite her anger, she, like many other sibs, often simply suppresses her emotions when she's around him. She let us know that we would not be able to tell that she felt this way if we were to see her with her brother. She struggles with the fact that her parents support him financially because she doesn’t support providing for him at his every whim. She once brought her frustrations up with her dad who became very aggravated with her. “Sorry,” she said “these are my emotions.” She described how, when she is one of his primary caretakers after her parents' passing, she is going to handle his financial support in a much more regimented manner. While she certainly respects and cares deeply for her parents, it's clear that a portion of her anger seems to have come from her disagreements with how they have consistently supported and enabled her brother's lifestyle.

She said she can essentially only talk to her sister about her brother. “We literally felt like we were the only ones who could really understand each other. Because it’s so hard when you’re trying to describe [him] to someone because he doesn’t have a diagnosis.” She told us that, “even good friends are good listeners but unless they have a sibling, they really don’t get it…they can’t really empathize and they don’t really know what to say.” She has wrestled with how and to whom to unroll her brother’s story. She, along with many others that we have spoken with, try to understand “how much is he really able to comprehend versus how much of it is his disability” and she yearns to speak with others about their experiences as sibs. She talked about wanting to know about services she could get for her brother and also emotional support she could get for herself. “It’s one thing online, it’s great, but person to person is even better”. She was definitely a reminder to us of the need for increased visibility around sibling issues as well as access to high-quality and yet affordable support services for siblings.

We loved speaking with her about her life and her brother and her frustrations with being a sib. She really proved to us, once again, how important sibs’ stories are, for the sibs themselves, for their peers, and for other sibs around them.

Claire and Ellie

"We all have the basics."

Whenever we tell people about our project, the second or third question that they tend to ask is how do you decide who to interview?  Do you only interview people with autism? Is it only people with mental disabilities and not physical ones? The way that we’ve come to answer all of these questions is to let the sibs take the lead. If they reach out to us and consider themselves to be a sib, who are we to tell them that they’re not? I started with this question because yesterday we had the chance to have our first interview with a sib of someone with mental illness, specifically bipolar disorder. Emily, a fellow college student who I met at a summer program, opened up to us in such a candid yet caring way about her older brother Jesse and his long time struggle with his disorder.

Jesse, now 21, was diagnosed with bipolar disorder unusually young, at the age of 8, which means that Emily has been living with this disorder for a large portion of her life. Perhaps because she has a much younger sister, Emily almost immediately stepped into a motherly role, often taking her sister and leaving the house whenever Jesse was embroiled in one of his drastic mood swings. However, it’s clear that Emily never resented this extra responsibility, saying that “I took care of her when my parents needed to give attention to Jesse.” It is clear though that Emily struggled with a variety of emotions during this time, especially fear. She told us that “I would stay away from him, I was scared,” noting that for those with bipolar disorder, “they don’t mean to hurt you but there is potential for them to hurt you.” Despite these childhood challenges, Emily repeatedly spoke of how close knit her family is and how her family jokes that she’s the glue that holds everyone together, a sentiment that seemed truer and truer as the interview continued.

One trait that I especially admired in Emily was her commitment to being a wonderful mentor to her younger sister regarding how to handle Jesse’s outbursts and difficulties. After Emily’s parents pointed out Katie’s constant emulation of Emily, Emily made it a point to set a good example for her when it came to Jesse. She explained to Katie the importance of being really accepting of Jesse since he didn’t bring these issues upon himself. Emily encourages Katie to try to ignore the outbursts as much as possible and to always remember that Jesse is their brother.

Like other sibs we’ve spoken with, Emily firmly believes that having a brother like Jesse has impacted her in a positive way. She credits her desire to help others with her appreciation for the way her community often reached out to support Jesse and their family. Emily also has found that having Jesse as a brother has pushed her to look for the best in people she encounters, because as she says “we’re all people, we all have the basics”. Regarding Jesse specifically, Emily made it clear that she “can see past these things he’s done in the past because it’s not his fault.” Her ability to see beyond Jesse’s symptoms and still love him as her older brother was inspiring to us all.

Claire