Women diagnosed with ADHD open up about struggle to find care

As the CDC reveals a surge in Americans with ADHD, many are reporting difficulty in accessing care, including long waits for evaluations, missed diagnoses, and struggles to find medications that are in short supply.

Raquel Gonçalves Lubbers, 47, says for her, those challenges date back to childhood. She says she struggled for decades with feelings of overwhelm, chaos and, at times, suicidal ideation. But despite years of complaints she says her doctor’s answers never changed.

"It had always come back to 'ugh, anxiety and depression, they're so hard,'" Lubbers said. "'It's so understandable. You're such a perfectionist and an overachiever; who wouldn't be experiencing these things?'"

But at 42, Lubbers says her life hit a “crescendo of difficulty” and she discovered that her children were struggling, too. So she decided to insist that they all get neuropsychological evaluations. After calling multiple providers, spending more than $7,000, and waiting five months for neuropsychological evaluations, they finally learned that they all have ADHD. Raquel’s husband was later diagnosed as well.

"It came with relief," Lubbers said. "And then it came with anger, like, why didn't anyone find this before when I had tried to get help?"

Experts say part of the problem is that the criteria for diagnosing ADHD were developed for boys.

However, according to NYU Langone psychiatrist Dr. Lenard Adler, those symptoms often present very differently in adults and females.

"In general, adults have more of the inattentive symptoms than the hyperactive and impulsive and that is more true for women than for men," Adler said.

Adler says if providers ask the kinds of questions typically used to diagnose boys, like if the patient runs about and climbs, they’re likely to get a negative response, and incorrectly conclude the patient does not have ADHD.

“But if you ask them, are they always busy? Are they doing more thing at once, even when they're trying to sort of settle down, trying to focus on one thing, that's really where you'll get positive answers,” Adler said.

According to a 2023 study in the Journal of Attentive Disorders, women with ADHD often face the risk of misdiagnosis, a challenge that Lindsay Scola says she personally encountered after working on a writing project that involved a character with ADHD and recognizing the symptoms in herself.

Scola’s doctor recommended she see a neuropsychologist, but she says it took weeks to get her calls returned.

"Once they called me back, they didn't take my insurance," Scola said. "And so I found another person and that person did take my insurance. And by the time that person called me back and found out that they don't do ADHD testing, I was in sort of a loop for many, many months."

Six months later, Scola finally got an appointment, but she said she immediately felt dismissed and like she was being challenged to prove she had ADHD.

"This woman told me that I should really just start calendaring what was going on in my world and I've been keeping a calendar since I was a teenager," Scola said.

Without a full evaluation, Scola says the psychologist told her she was likely depressed.

So she started the process again, of looking for a new provider. Five months later, a complete evaluation by a different psychologist, revealed that she is in the 99th percentile for inattentive ADHD, Scola said.

Getting the proper care after diagnosis can also be a challenge.

Diane Macedo of ABC News, who has ADHD, said that she had five psychiatrists cancel appointments with her due to issues with insurance. So she decided to pay out of pocket.

"I schedule another appointment with another psychiatrist. And she cancels on me," Macedo said in an Instagram video in August.

Macedo says that psychiatrist would not accept her extensive diagnostic report from a psychologist, instead insisting on conducting her own evaluation, which she said will cost hundreds of dollars.

Adler says there simply aren’t enough psychiatrists to provide care to all ADHD patients.

"It's not possible for patients to see specialists like me all the time," Adler said. "Many are going to be seeing primary care providers. And they previously have been more comfortable in making a diagnosis of anxiety and depression than ADHD."

But even with a prescription, a recent CDC report shows nearly three quarters of ADHD patients prescribed stimulant drugs are reporting difficulty getting the medications due to ongoing shortages.

For Lubbers, medication was an immediate game changer. But she says that getting medication for herself and her family is sometimes impossible.

"It's been about three weeks since we've been trying to get medication," Lubbers said. "After the difficulty of actually getting the appointments, getting the prescriptions, which is already hard. And now I'm on the phone every day calling around, and it's 'no, no, no. We're out. We're out.'"

Dr. Harsh Trivedi, CEO of Sheppard Pratt suggests that patients check if their insurance includes a mail-away plan and contact the manufacturer.

"Sometimes there are ways to access the medicine directly from the manufacturer, or they can tell you where supplies may exist," Trivedi said.

So far, Lubbers says that hasn’t worked for her so she’s using her skills as an ADHD coach to help her family navigate this challenging time while they continue searching for medications.

Scola is now seeing her new psychologist regularly for non-medication treatment and is teaming up with Macedo for weekly accountability meetings guided by a cognitive behavioral therapy workbook.

"It's been so helpful, you know, working through something with somebody else," Scola said.

And Macedo is now seeing an ADHD coach weekly, as she continues to search for a psychiatrist, and explore care through her primary care physician.

If you are struggling with thoughts of suicide or worried about a friend or loved one, call or text the Suicide & Crisis Lifeline at 988 for free, confidential emotional support 24 hours a day, seven days a week.