At 25 she found out she had the breast cancer gene. Now, she's grieving motherhood.-InfoExpress
This is the second story in a series exploring grief, how people face it, cope with it and heal from it.
Click here to read the first installment: This family went through an unimaginable tragedy. How YouTube helped.
Susan Youngsteadt is only 31 years old. But she's had a lifetime's worth of gut-wrenching grief.
She lost her mother to early onset Alzheimer's when she was 17, and her father to prostate cancer when she was 25. And her grief goes beyond death. Youngsteadt has a hereditary BRCA II genetic mutation – commonly known as the breast cancer gene – meaning she could pass it on to a child.
"It is something that I have always known I would need to be tested for, as it ran in my family," Youngsteadt says. "And then I found out I had it when I was 25."
The Raleigh, North Carolina, social worker is grieving possibilities. Children. Routine doctor's appointments. Her future.
And all forms of grief are valid, despite that "there's this hierarchy around what grief deserves to get mourned or get honored," says Loree Johnson, a licensed marriage and family therapist.
People don't want to talk about grief, but we want to change that.
"There's a lot of good decisions that come from being able to prevent what could come from having BRCA, but then there's the grief and the exhaustion that comes with managing it and making these future decisions to potentially not pass it on to somebody else," she says.
Grief series:Her son died, and she felt alone. In her grief, she found YouTube.
Breast cancer 'double whammy'
The reality is as follows: 50 out of 100 women with a BRCA gene mutation will develop breast cancer by age 70 (compared to just 7 out of 100 women across the U.S.); 30 out of 100 will get ovarian cancer on the same timeline (as opposed to fewer than 1 out of 100 women across the U.S.), according to the Centers for Disease Control and Prevention. Those with a family history of breast cancer – which Youngsteadt inherited from her father's side, though her mother was also a breast cancer survivor – may have a higher risk of breast cancer.
"I had a double whammy, and it was pretty guaranteed at that point that I would get the gene," she says.
At age 25, most people are thinking about getting married. Having kids. Youngsteadt was thinking about life in a different way to stay on top of her health. Then her father died just six weeks after she learned she had the mutation. Her father, a nurse, had told her beforehand: "We'll deal with whatever happens.'"
And so they did.
"I'm just very grateful that he was still alive when I found out that I had it because I think I would have lost it tremendously at that point if I had also had to bury him and then find out afterward," Youngsteadt adds.
Health insurance can be 'just insane'
Youngsteadt knows "there's wonderful treatment for this type of genetic mutation. So what that means is I go get mammograms, MRIs and ultrasounds on a rotating basis every year. Some of it's covered by insurance, some of it is not. So it's very expensive to maintain."
She carries some financial grief too: "I'm in my young 20s at the time, having to think about this and having to budget for these types of things when everyone else can just go do whatever they want most of the time. But for me, it's always been a very heavy weight. I have to plan my health care appointments. I have to make sure I have the right health insurance that will cover these things, certain life insurance policies will not cover you with a pre-existing genetic mutation, which is just insane."
While she has a loving partner who is also OK with not having children, "that is something that I actively seek therapeutic support around and a community around of choosing to be childless. And some of that choice is due to my health, it is due to the risks that exist in my family system with both of my parents having a cancer diagnosis."
Some patients in similar positions opt for a specialized form of genetic testing where embryos are tested for the relevant genetic mutations but each case – and each person – is different.
The plan is for Youngsteadt to have a full mastectomy with reconstruction, with the possibility of having her ovaries taken out too.
Grief is not 'contagious'
Youngsteadt has many ties to the grief community. Plus, her social work background has more than attuned her to therapeutic skills.
"I'm able to take trainings and also immerse myself in grief counseling and support," she says. Youngsteadt is working on her grief clinician certification and training to be a death doula; she has found comfort in The Breasties, a breast cancer organization, and her maternal aunt who also carries the gene.
Talking could be beneficial, but not all talk will be helpful: "When someone is grieving another type of loss, like the loss of hope after learning they can't have a child, the information might be kept private," says Amy Morin, psychotherapist and the host of a podcast. "Other people may also minimize the impact of a loss. That can slow the healing process."
Grief slithers into our lives at inconvenient times. It leaves us uncomfortable and unwilling to discuss it. "People get worried that it might be contagious," says David Kessler, grief expert and founder of Grief.com. "Like, if I hear too much about your parent dying, it doesn't mean my parent's dying soon. Is it?"
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'Where I'm supposed to be'
Some days are harder than others for Youngsteadt. When we speak, she's grieving her parents. Hard.
"Sometimes it's hard to separate (the different grief experiences)," she says. "But I think something we tell people to do clinically and therapeutically is that you have to hold space for each one and take all the time you need to cry or have a ritual or seek support around each thing and let it run its own course. And then you can pick up the next thing."
Grief wasn't something Youngsteadt ever planned on. No one does.
But "the older I get, and the more grief has touched my life, I think that's where I need to be," she says. "And I think that's where I need to immerse myself. It's where I feel the most aligned. It's where I feel – it's weird to say comfortable – but it's where I really feel like that's where I'm supposed to be."
Interesting:From virtual reality afterlife games to death doulas: Is our view of dying finally changing?