MKE Community Journal

“If doctors are supposed to be allies in our pursuit of wellness, then why do so many patients feel dismissed, ignored, and not taken seriously about their health concerns?”  Activist Claire Galloway–who has received more than her share of this toxic treatment by doctors–reveals just how damaging it can be when doctors don’t listen.

CHARLOTTESVILLE, VA (March 2018)–If you’ve ever left the doctor’s office feeling like you haven’t been listened to or that you were not treated with the level of compassion and care you deserve, you’re not alone. Many patients today have horror stories in which their health concerns were ignored or dismissed by the medical professionals who should have been there to help them. Activist Claire Galloway has seen the life-altering damage this causes firsthand and says it’s time for a change.

“It is harmful when doctors ignore or discount patients’ symptoms and needs, particularly when their symptoms don’t point to a clear diagnosis,” says Galloway, author of “A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury” (Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95, www.acalltomindtbi.com ). “When you have a real medical problem and you repeatedly don’t get the diagnosis and care you need, it can create a nightmarish snowball effect as you become further discredited by other medical professionals and the other people in your life as well.”

It’s bad enough when you are struggling to be taken seriously about your own health problems. But it’s exponentially worse when you are trying to advocate as a parent for your sick child and keep hitting walls.

Galloway’s son, Luke, suffered a closed-head traumatic brain injury (TBI) when he was struck by a playground swing in full motion at age two. Overnight, Luke changed from a happy-go-lucky little boy into an anxious and easily agitated child. But because he appeared to be “fine” on the outside, no one took his symptoms seriously–not his pediatrician, his teachers, two pediatric neurologists, several child psychologists, or family and friends.

And as Luke grew up, different symptoms appeared. He complained of noises in his head. He experienced synesthesia. He got “stuck” in thoughts he couldn’t move through. He struggled in school (despite his high IQ). He became socially isolated. He began to act out impulsively, and, eventually, without a diagnosis or help of any kind, depression set in. For years, Galloway had insisted to the doctors that Luke’s behavioral problems appeared suddenly and immediately after his head was struck by that swing. But instead, the doctors denied a connection to the accident and blamed his behavior on bad parenting. After 16 years, a TBI diagnosis was finally made and confirmed by brain scan. But by that point, an effective treatment could not be found, and at age 22, wracked by despair, Luke took his own life.

“If I had been able to find even one doctor who took Luke’s symptoms seriously following his accident, maybe he would have had a chance to learn ways to circumvent the injury and thrive,” says Galloway. “Medical professionals must be trained to listen to and value parents’ concerns, connect the dots when symptoms aren’t lining up with a clear diagnosis, and find empathy for patients–rather than discrediting or placing the blame on them.

“No one knows you–or your child–better than you,” adds Galloway. “If your instincts tell you that something is wrong, never stop until you find a doctor who can treat you with respect, compassion, and empathy.”

So, what is the real cost of not being heard? Keep reading to learn about the damage caused when you and your health concerns (or your concerns about your child) are discounted by medical professionals:

FIRST, IT PREVENTS YOU FROM GETTING THE MEDICAL TREATMENT YOU NEED. The very worst result of being dismissed by doctors is that you are never properly diagnosed and never get the treatment you need. “I often imagine what Luke’s life could have been like with a proper diagnosis and treatment,” says Galloway. “I feel certain he could have been saved.”

While her own story is nowhere near as tragic as Luke’s, Galloway personally understands how it feels to be ignored and discounted by doctors. For 20 years she had an undiagnosed atrial heart rhythm disturbance. Despite passing out in ballet class as a teen or heaving violently after tennis matches, her doctors blamed her condition on “women and emotions.” They accused Galloway of overreacting and creating her symptoms to get attention. She even discovered that two notes had been placed in her file by her doctors. One note simply read, “A case for the emotional wastebasket.” The other read, “Give her a stress test, pat her on the hand, and send her home.”  A correct diagnosis was finally made, simply by being in the right place at the right time, but, by then, she found it difficult to reestablish credibility, despite the hard copy diagnosis in hand.

IT’S PAINFUL AND DEBILITATING TO BE TREATED WITHOUT COMPASSION AND EMPATHY. It hurts to be ignored and dismissed–especially by someone whose job is to listen, observe, diagnose, and help people. Not being listened to wears down your resolve over time and can make you want to give up.

“When I was searching for answers for Luke, I felt discounted by the lack of empathy I encountered from physicians,” says Galloway. “Worse than that, I felt blamed. Instead of being quick to judge or dismiss, doctors should ask themselves, “How would I feel if this were happening to my child?”

IT DESTROYS WHAT SHOULD BE A TWO-WAY RELATIONSHIP. The doctor-patient relationship should be based on trust and mutual respect, says Galloway. When your doctor or your child’s pediatrician won’t take your concerns seriously, it breaks your trust and severs this important relationship.

IT’S ALSO HARD ON YOU PSYCHOLOGICALLY. “When enough professionals dismiss your concerns, self-doubt inevitably sets in,” says Galloway. “Not only do you begin to question the symptoms you’re experiencing, you also begin to question your own sanity. You begin to feel like the problem is you. Eventually, you may start to believe what they’re telling you–even when something clearly is wrong. Not only are you sick, but you’re also depleted and bruised emotionally, with no support anywhere.”

IT CREATES A SNOWBALL EFFECT OF DISBELIEF (BOTH INSIDE AND OUTSIDE OF THE DOCTOR’S OFFICE). When medical professionals discount your health concerns, it creates a case for other doctors to doubt you as well. And it doesn’t stop with the medical community. When doctors won’t verify your symptoms, it can lead to discord between you and your partner, your family members, your employer, and your friends.

IT PERPETUATES SOCIETY’S TENDENCY TO LISTEN TO AUTHORITY FIGURES (EVEN WHEN THEY ARE WRONG). Society has been trained to take doctors at their word and accept whatever they tell you. The problem is, doctors are human too and sometimes make mistakes.

“It’s shocking how quickly people–including your friends and family members–will jump on the bandwagon and agree with a medical professional,” says Galloway. “But when the doctor is wrong, this tendency can be dangerous for the patient who needs answers and solutions.”

IT PERPETUATES JUDGMENT FROM OTHERS. Unfortunately, even well-meaning people–including medical caregivers and parents of healthy children–sometimes can’t understand things they haven’t lived through personally. Galloway shares an analogy about what it’s like to face this judgment from others:

“Parents with healthy children travel down what I call a ‘Main Street,'” says Galloway. “When there is a trauma of any kind, it can toss the family onto an alternate, less-traveled route. Along this more difficult path, parents learn a deeper level of empathy, determination, and hard work. The family still understands the ‘Main Street’ travelers, because that is the norm. But many travelers on ‘Main Street’ do not understand the journey of those on that alternate route, because they have not been challenged to think in a different way. They judge by what they know.”

IT PERPETUATES BLACK-AND-WHITE THINKING. “Every person is different, so a ‘textbook’ answer may not apply to each and every patient,” says Galloway. “My own medical history opened my eyes to the reality that physicians are limited in their ability to diagnose and treat illness by what they’ve been taught. When medical professionals are trained, they should be taught to really listen to what their patients are telling them and to keep searching for solutions even when the diagnosis is not clear-cut.”

If you recognize any of these symptoms of being dismissed by your doctor, Galloway warns that you may need to walk away and find a doctor who is a better fit for you, before irredeemable damage is done. Keep reminding yourself what a difference a real diagnosis and proper treatment will have on your life.

It’s clear that big changes are needed in how the medical community trains its doctors. Galloway says that the onus should never fall on the patient or the parents of the patient to “prove” to care providers that they are sick. But in the meantime, you can be ready to advocate for what’s right for you and your loved ones. EDITOR NOTE: PLEASE SEE ATTACHED TIPSHEET, WHEN DOCTORS DISMISS YOUR SYMPTOMS: HOW TO BE A BETTER ADVOCATE FOR YOURSELF (OR SOMEONE YOU LOVE).

“Getting your doctor to take you seriously is a burden that shouldn’t be on your shoulders in the first place,” says Galloway. “But if your physicians refuse to address your or your child’s symptoms to your satisfaction, you must continue to fight until you get the answers you need. Whatever you do, don’t ever give up hope that you will be heard.”

# # #

WHEN DOCTORS DISMISS YOUR SYMPTOMS:HOW TO BE A BETTER ADVOCATE FOR YOURSELF (OR SOMEONE YOU LOVE)

Insights from Claire Galloway, author of “A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury” (Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95, www.acalltomindtbi.com

It’s extremely upsetting when doctors are dismissive of your symptoms or devalue your perceptions about your own health. But the worst thing that happens when doctors don’t take you seriously is that real medical problems often get misdiagnosed and go untreated. And if you are a parent trying to advocate for your sick child, it can be all the more distressing to feel ignored.

According to activist and author Claire Galloway, when doctors don’t take patient concerns seriously, it’s a symptom of a bigger power imbalance that can exist between patients and medical professionals.

“Doctors have been trained to listen, to diagnose, to treat every patient to the best of their ability, and to do no harm,” says Galloway, author of “A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury “(Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95, www.acalltomindtbi.com [3]). “Therefore, it can be a serious problem when that training breaks down and patients’ symptoms go unaddressed.”

Galloway recommends that healthcare professionals be periodically retrained, with an emphasis on becoming better listeners and learning to better handle cases that aren’t black and white without shutting down patients. They should also be retrained on soft skills like learning to treat patients with greater empathy and compassion. Until that happens on a broad scale, you’ve got to be your own advocate when you know something is medically wrong–and you must also advocate for your children in the same way.

Galloway offers these tips to help you advocate for yourself and your loved ones when you’re experiencing chronic or hard-to-diagnose symptoms.

GATHER THE TROOPS. When you are in the middle of a health crisis (either yours or your child’s), it can be very difficult to be an advocate all by yourself. So when you visit the doctor, don’t go alone. You may be nervous, exhausted, or stressed, and this isn’t the time to be anything less than prepared. Having a trusted companion in your corner can help you present a united front that softens the physician’s dismissiveness and leads to a more open-minded approach. Bring your spouse, an older child, a neighbor–anyone who can corroborate the symptoms you are reporting.

BE ON THE LOOKOUT FOR SIGNS THAT YOU AREN’T BEING TAKEN SERIOUSLY. Take note of any dismissive language you hear from your doctor about your own health concerns or those of your child. Below are a few red flag phrases to listen for. If you hear anything like this, it may be time to find another doctor.

Let it go.

Stop overreacting.

He/she is an imaginative child.

You’re a first-time mother; what do you know?

It’s all in your head.

You seem stressed.

FIGHT AGAINST FALSE NARRATIVES. If you must go it alone, fight against the message that you are overreacting about your symptoms or your child’s symptoms.

“My son lived with an undiagnosed traumatic brain injury for 16 years,” said Galloway. “During this time, I was repeatedly given the message that I was blowing his health and behavioral problems out of proportion, even though I was certain there was a correlation between his symptoms and the accident that had immediately spurred the changes I was observing. When you know something is wrong, remind yourself constantly that you are not overreacting as you continue fighting for answers.”

TRY TO KEEP YOUR COMPOSURE. When you or someone you love is sick, it’s totally understandable to feel frustrated, angry, and emotional when your concerns are dismissed. But Galloway urges you to try to stay calm during your appointment if at all possible. And if you do become visibly upset, take a deep breath, forgive yourself for being human, and refocus your energies back to what is important.

WRITE DOWN YOUR QUESTIONS BEFORE THE VISIT. Before you go to your appointment, write down any questions you have about the symptoms you or your child are experiencing. Being prepared will make you feel calmer during the appointment, and your physician will appreciate hearing a concise checklist of your concerns.

KEEP FLAWLESS RECORDS. Keeping a journal that documents the symptoms not only helps you keep track of important medical details you need to remember, it also provides your doctor with info that can better help them form an accurate diagnosis.

DO YOUR OWN RESEARCH. Go to the library or go online to learn all you can about your or your child’s symptoms. Make copies of any information you find that supports any theories you have about what is wrong. You may also want to contact local or national medical agencies to gather pertinent and substantive information that matches your concerns. Take this information with you to the appointment.

RESPECT YOUR INTUITION. “Pay attention to your gut feelings when you’re trying to get to the bottom of a medical problem,” says Galloway. “And if you are advocating for your child, listen even more carefully to that little voice. Mothers are particularly blessed with powerful intuition when it comes to their children.”

CONNECT WITH OTHER PEOPLE WHO FEEL DISMISSED. When you are fighting for an accurate diagnosis involving a chronic health problem, it’s a long and often discouraging journey. Galloway encourages you to find support from others who are also struggling to find answers. Talking with others about your shared experience will empower you to keep fighting until you get the correct diagnosis and the treatment you need, and you can help others to do the same.

BE ON THE LOOKOUT FOR A GENDER BIAS. When Galloway fought to get a diagnosis for her son’s symptoms, she felt that much of the dismissal she experienced was a sexist reaction from male doctors in particular. If you feel discriminated against or not taken seriously because you’re a woman, find another doctor immediately.

“When I advocated on behalf of my son, I believe being a stay-at-home mother discredited me in the doctor’s eyes,” says Galloway. “Luckily times are changing, and women are finally starting to demand and receive the respect they deserve. But all of us need to move further in this direction, until all patients are valued equally and listened to. Until then, patients will continue to suffer needlessly.”

DON’T BE AFRAID TO GET A SECOND (OR THIRD) OPINION. Do your best to work with your first-line medical team, holding a firm line that you need answers. But if you hit a brick wall and continue to feel dismissed, take your concerns elsewhere and explain why. Maintain an expectation that you will be heard and present your concerns as clearly and concisely as possible.

GATHER REFERRALS FROM PEOPLE YOU TRUST. You can often find a good doctor from word-of-mouth referrals. Ask people you trust–friends, colleagues, neighbors–for suggestions. If you know of someone who has had the same symptoms you are experiencing, find out who is on their medical team and consider booking appointments with those doctors.

ADVOCATE, ADVOCATE, ADVOCATE. Whatever you do, don’t give up hope that someone will believe you. Don’t fold. If you know something is wrong with you or with your child, never take no for an answer. Fighting for both of you is the very best gift you could ever give.

“When your doctor dismisses or ignores your health concerns, you can’t fall into self-doubt or despair no matter how desperate you feel,” concludes Galloway. “It can be exhausting, but remember, you know yourself better than anybody else–and if you’re a parent, you know your child. Never stop advocating for the diagnosis you need–never give up.”

# # #

ABOUT THE AUTHOR:
Claire Galloway is the author of “A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury”. She has been advocating for greater awareness of closed-head traumatic brain injury in children since 2008. She has spoken at several brain injury conferences and to students of education. This is her first book. She resides in Virginia with her husband, Mark.

ABOUT THE BOOK:
“A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury” (Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95) is available at bookstores nationwide and from all major online booksellers.