woman in a wheelchair

Many parents of children with serious illnesses struggle to get doctors to take their concerns seriously. Unfortunately, that skepticism didn’t protect Gypsy Rose Blancharde from 23 years of physical and emotional abuse.

Dee Dee Blancharde was a model parent: a tireless single mom taking care of her gravely ill child. But after Dee Dee was killed, it turned out things weren’t as they appeared — and her daughter Gypsy had never been sick at all.

She did not have a job, but instead served as a full-time caretaker for Gypsy Rose, her teenage daughter.

Gypsy was a tiny thing, perhaps 5 feet tall as far as anyone could guess. She was confined to a wheelchair. Her round face was overwhelmed by a pair of owlish glasses. She was pale and skinny, and her teeth were crumbling and painful. She had a feeding tube. Sometimes Dee Dee had to drag an oxygen tank around with them, nasal cannula looped around Gypsy’s small ears. Ask about her daughter’s diagnoses, and Dee Dee would reel off a list as long as her arm: chromosomal defects, muscular dystrophy, epilepsy, severe asthma, sleep apnea, eye problems. It had always been this way, Dee Dee said, ever since Gypsy was a baby. She had spent time in neonatal intensive care. She had leukemia as a toddler.

The repeated invasions of Gypsy’s body in the name of these illnesses she turned out not to have were, in short, serious and prolonged.

That doctors often miss Munchausen seems counterintuitive, but the doctor-patient relationship is a bond of trust that goes both ways. “As health care providers,” said Caroline Burton, a doctor at the Mayo Clinic in Florida who’s treated cases of Munchausen where the proxy is an adult, “we rely on what a patient tells us.” Even if a doctor suspects his or her patient is lying, there isn’t much incentive to refuse treatment based on the doubt. What if the doctor is wrong and the patient suffers for it? “You have to be careful not to overlook organic disease,” Burton said. “You’ve really gotta go through quite a lot of diagnostic hurdles.”

Under other circumstances, a tale of child abuse as long and as involved as what Gypsy experienced might have inspired public sympathy. But something about the fraud element deeply offended people, particularly those who hadn’t known Gypsy or Dee Dee at all. Evidently there are a lot of people who are worried that others who are sick and disabled don’t deserve their generosity. So Facebook groups began to spring up. They splintered on whether Gypsy could be said to be blamed, whether Rod and Kristy were in some way in on the fraud. Some groups ballooned to over 10,000 members, some of them posting every day about the crime, voicing unfounded theories about what had happened.

It took [the public defender] months to get Gypsy’s own medical records, because Dee Dee had set up a power of attorney over Gypsy’s medical decisions after Gypsy turned 18. The hospitals refused to help, even though the power of attorney did not surrender Gypsy’s rights to look at her own medical documents.

When the records finally arrived, though, they were so damning, Stanfield called the prosecutor without needing to investigate further.

Her voice is still high-pitched, though now that we know what we know, it no longer seems unusually high at all. People heard what they wanted to. Gypsy speaks in long, beautiful sentences. She is sometimes so eloquent in conversation that it is hard to believe anyone could have ever spoken with her and thought her “slow,” as some put it. It reminded me of all the doctors who wrote in her files that in spite of Gypsy’s alleged cognitive defect, she had a “rich vocabulary.”

She was eager to talk, barely able to contain herself once she started. She wants people to know, she said, that this wasn’t a situation where a girl killed her mom to be with her boyfriend. This was a situation, she said, of a girl trying to escape abuse.

Gypsy still doesn’t feel she actively deceived anyone. “I feel like I was just as used as everybody else,” she said. “She used me as a pawn. I was in the dark about it. The only thing I knew was that I could walk, and that I could eat. As for everything else… Well, she’d shave my hair off. And she’d say, ‘It’s gonna fall out anyway, so let’s keep it nice and neat!’” Gypsy said her mother told her she had cancer, too, and would tell her that her medication was cancer medication. She just accepted it.

I asked, repeatedly: Are you angry? With your mom? With the doctors? She will admit only to frustration. “It makes me frustrated that none of the other doctors could see that I was perfectly healthy. That my legs were not skinny, like someone who was [really] paralyzed. That I can’t… I don’t need a feeding tube. Stuff like that.”

Read the whole story on Buzzfeed.

This is an external article from our library

Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection.

Have a great story about care work? Use our contact form to submit it to us so we can share it with the community!

Related Articles

manic pixie dream world

manic pixie dream world

Rayne: Eliza, do you consider yourself mentally ill? Eliza: Rayne, at one time, I would have said I am extremely mentally ill. I no longer say that....

Popular categories

After Caregiving
Finding Meaning
Finding Support

Don't see what you're looking for? Search the library

Share your thoughts


Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.