One Woman's Story Of "Recovering From Psychiatry"

Laura Delano grew up in a wealthy Connecticut suburb in a family of high achievers. She was a nationally ranked squash player and student body president. But in her teen years, life got more complicated as she struggled with her own identity and felt burdened by the pressures she felt from her environment. She started to act out, cut herself, and was sent to a psychiatrist by her parents. At 14, she was diagnosed with bipolar disorder and prescribed powerful psychiatric drugs, including the mood stabilizer Depakote and Prozac. 

With medication side effects leading to additional problems and “symptoms” which in turn led to more medications, Laura says she began to lose herself. She was defined by the diagnoses she continued to collect: bipolar disorder, borderline personality disorder, substance abuse disorder and binge eating disorder. She was taking up to five psychoactive substances at a time, including an anti-depressant, an anti-psychotic, a mood stabilizer and an anxiolytic (anti-anxiety agent).

Her early twenties were marked by multiple psychiatric hospitalizations and ultimately a suicide attempt. Her only identity was a self-described "professional mental patient."

But then things began to change.

Over five years ago, Laura weaned herself off psychiatric drugs and shed her diagnostic labels. For her, this has been a spiritual journey involving the cultivation of self-acceptance, self-love and honesty. “It is the hardest thing I have ever done,” she says, but she now feels happier, more connected and more engaged in the world.

Personally, I have been moved by Laura’s story. As a practicing internist, I often rely on psychiatric diagnoses and medications. In my clinical practice, I have seen psychiatric medications reduce suffering and save lives. But it has been useful to step back and reconsider my filter on these issues.

From day one of medical training, we are taught to fit our patients into neat diagnostic categories whenever possible. The goal of our patient interactions, we learn, is to sift through and distill all that we see and hear in order to hone in on a diagnosis. This categorization can be helpful in directing our care, of course, but it can also be limiting, and even dangerous. Rarely does a diagnosis fit perfectly, yet all too often in our culture one’s diagnosis becomes indistinguishable from one’s identity. Labels have power.

With mental illness, diagnostic criteria are particularly difficult to define and identify. Truthfully, our current understanding of the brain and the biochemistry behind mental illness is limited. There are no clear markers to measure and quantify. Instead, we must rely on subjective interpretation of behavior.

And yet, psychiatric labels abound. It is estimated that one in four adults, or approximately 61.5 million individuals, and one in five teens between the ages of 13 and 18, meets criteria for a diagnosis of mental illness within a given year.

Laura would say that the medical establishment often miscategorizes healthy struggling as pathology, and that this is especially true in adolescence, when some degree of acting out is to be expected. She believes this is what happened to her.

Today, more than 20% of Americans regularly take psychotropic medications—chemical substances that alter brain chemistry and function, and ultimately emotions and behavior. In 2010, sale of such medications amounted to more than seventy billion dollars in the US, and prescription rates continue to climb for both children and adults.

Again, our scientific understanding of how these medications work is shockingly poor. It has something to do with a soup of neurotransmitters—serotonin, dopamine, norepinephrine—but we haven’t nailed down the exact mechanisms of action.

Can we really say with complete confidence that mental illness is primarily the cause of chemical imbalance in the brain? I don’t think so. Not yet anyway.

Moreover, the list of negative side-effects of these medications seems almost endless—weight gain, cognitive impairment, drowsiness, dry mouth, higher rates of diabetes, increased suicidality, sexual dysfunction to name a few--and studies suggest that long term use of such substances may actually lead to increased disability over time.

Most concerning of all is the increasing and often “off-label” (i.e., not FDA approved) use of such medications in children. For instance, the number of children receiving atypical, or second generation, anti-psychotics doubled between 2001 and 2010. Disturbingly, children on Medicaid are four times more likely to receive these drugs than kids with private insurance. What are we doing to these developing brains? Again, we really don’t know.

I am not suggesting that all psychiatric diagnoses are wrong, or that every one on psychiatric drugs should stop taking them. Even Laura would say that it would be dangerous to stop taking these drugs abruptly, without a lot of planning, personal reflection, and supports in place. I still believe that psychiatric drugs can be helpful at times, and I will continue to prescribe them, but I will do so less frequently and with more awareness and caution.

All of us, and doctors in particular, need to ask questions about our current frameworks of understanding and about our assumptions. Laura’s story has reminded me of this. Every patient is unique, and there is still so much we don’t know.

A version of this story was originally published on WBUR CommonHealth Blog March 16th, 2016. 

Contact Laura: 

Laura on Facebook: https://www.facebook.com/lfdelano

Laura on Twitter: https://twitter.com/LauraDelano

Recovering from Psychiatry on Facebook: https://www.facebook.com/recoveringfrompsychiatry/

Laura's Suggested Resources:

www.madinamerica.com-- Mad in America

www.cepuk.org-- Council for Evidence-Based Psychiatry (UK)

www.beyondmeds.com-- Beyond Meds

www.recovery-road.org-- Recovery Road

Find suggested books here

What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family where underway?

This is what happened to Sue R. Levy. In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM. LAM is a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing, and in many cases, eventual lung transplant.

Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1300 documented cases in North America, LAM is poorly understood and at present no therapies of proven benefit exist.

Prior to diagnosis, Sue would have defined herself as happy and healthy. She had a successful career as a marketing executive, she was happily married, and she and her husband had decided to start a family. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually, and that perseverance would pay off.

In her words, “ My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things”. LAM changed everything.

Suddenly, Sue was forced to redefine herself as someone with a chronic disease and confront her own mortality. In addition, she had to let go of some of her dreams, first and foremost her desire for pregnancy, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction. Initially, she was angry. What had she done to deserve this? Over time, though, her perspective shifted. She came to accept her diagnosis and she let go of her preconceived notions of how her life “should” unfold.

Today, Sue would say that living with a chronic disease and an uncertain future, while obviously challenging at times, has improved her life dramatically. Her disease has helped her to get in touch with what she really cares about, and has set her life on a new course. With the goal of educating and healing herself, she went to school to study nutrition and became a natural foods chef. In 2011, inspired by how great she felt after making some lifestyle changes, she quit her marketing job and started Savory Living, a nutrition and healthy eating company that provides online nutrition and healthy eating classes and cooking classes, helping others to “eat well and feel better now.”

In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier. While the journey was difficult at times, the end result is a beautiful family. Sue feels happier and healthier than she ever has.

In an upcoming follow up piece, Sue will share more about her struggle with infertility and her journey to motherhood.

Originally published on WBUR Commonhealth Blog on April 4th, 2014.

Pulmonary lymphangioleiomyomatosis resources:

1)    To learn more about LAM, visit http://www.thelamfoundation.org/what-is-lam

2)    To listen to patient stories and find more information about LAM, visit http://www.lam.org.nz/videos.htm and http://lamaction.org/for-patients-their-families/patient-support/

3)    To locate a patient support group:

• 301-592-8573 is the number for the National Heart, Lung, and Blood Institute Health Information Center that can provide information about patient support groups.

• 1-877-644-5864, extension 3 is the number for the National Heart, Lung, and Blood Institute Health and Information Pulmonary Vascular Medicine Branch, which can also provide this information.

Tiron, Marie’s husband shares his perspective.

Lyzz, a 19 year old college student, has struggled with issues of weight, and ultimately with self-love, since childhood. Growing up, she watched her mother struggle with anorexia and endure multiple hospitalizations, feeding tubes, and seemingly endless suffering. She didn’t want to end up this way, and promised herself she would never have an eating disorder. Despite her best intention, she developed Bulimia by the time she was a teenager. With her mother as a role model, she had no idea how to have a healthy relationships with food and her body. She didn’t know how to love herself.

But most of us struggle with issues of weight, even when we have had healthy role models. The pressure to be thin in our culture is enormous, especially for girls. Thin is considered better, and eating disorders are pervasive. According to the National Institutes of Health, about 10 million people in the U.S. have an eating disorder, and 90% of these are women. Approximately 4.5% of all American high school students reported in a recent survey that they’d vomited or used laxatives as a means to lose weight in the past 30 days, and approximately 4% of college-aged females have bulimia. According to the 2007 Youth Risk Behavior Survey, 35% of adolescent girls believed they were overweight, 60% were trying to lose weight. The vast majority of eating disorders go untreated.

The numbers don’t tell the whole story. To truly understand, we have to listen to those who have been directly effected. In Lyzz’s words, “To fully grasp that terror of an eating disorder would take much more than an hour long interview. The struggle for perfection is destructive and unbearable. Not only is this goal an impossible one, but the process is crippling and fatal. An eating disorder needs you to feel imperfect, unworthy, ugly, fat, disgusting, wrong, horrible. It strips you of your health, your self worth, your life, your soul. It blames you for everything that goes wrong and berates you if you can’t fix it. You do not need to fix everything. It is not your fault. You don’t need to be perfect. You just need to be the best you can be and not be afraid of who you are. That is true beauty.”

Story first appeared on WBUR’s CommonHealth blog on February 3, 2011: http://commonhealth.wbur.org/2011/02/eating-disorder-bulimia-takes-over-life

Resources:

To learn more about eating disorders, visit

http://www.mayoclinic.com/health/eating-disorders/DS00294

For support as well as information about treatment options, go to

http://www.nationaleatingdisorders.org/treatment

630-577-1330 is the ANAD Eating Disorder Helpline in the United States that is open Monday-Friday 9:00am-5:00pm and provides information about symptoms and contacts for further support and treatment. The email anadhelp@anad.org is also available for these resources.

http://www.anad.org/eating-disorders-get-help/eating-disorders-helpline-email/

To listen to more stories about personal struggles with eating disorders, visit

http://www.nytimes.com/interactive/2008/10/14/health/healthguide/TE_EATINGDISORDERS_CLIPS.html

http://www.huffingtonpost.com/stephaniepapa/eatingdisorders_b_4265845.html?utm_hp_ref=mental-health

At age 51, Loie was diagnosed with pancreatic cancer. At the time of this interview, she had just celebrated five years cancer-free. Loie beat the odds.

On average, individuals with this disease survive 4-6 months after diagnosis, and only about 6% make it to five years. Early diagnosis is rare, as symptoms can be very subtle, or even nonexistent. All too often, the cancer is locally advanced or has spread outside of the pancreas by the time it is found, and surgery, the only curative treatment, is no longer an option. Even with surgery, prognosis is poor, with five year survival rates ranging from 10-30%.

Everyone copes with illness differently. For Loie, focusing on the positive was the key. She didn’t want to hear or think about the severity of her condition. In her words, “I protected myself by not knowing.” She chose not to read a lot about her cancer, and intentionally avoided the Internet. She decided she was going to get better, and, except in rare and fleeting moments, she did not allow herself to consider other options — like an early death. In talking to her young son, Chris, Loie decided to tell him that everything would be fine, even though she was well aware of the grim statistics.

Loie has been lucky, and her positive attitude has helped her along the way.

Listen to Loie’s husband, Wayne, and her son, Chris as well, as they share their experiences of having a family member with cancer.

Story first appeared on WBUR Commonhealth Blog on August 26, 2010: http://commonhealth.wbur.org/2010/08/pancreatic-cancer-kills

Resources:

To learn more about pancreatic cancer, visit

http://www.mayoclinic.com/health/pancreatic-cancer/DS00357

To find support resources and survivor stories, visit

http://www.pancan.org/section_facing_pancreatic_cancer/find_support_resources

To find information and support for families and friends of individuals facing cancer, visit

http://www.cancer.gov/cancertopics/coping/familyfriends

Anne grew up with privilege. She was well-educated, and she had resources. She married a Harvard professor. She sent her children to a prestigious private school. On the surface, her life looked neat and pretty, even enviable. But her life had another, hidden side.

For over forty years, Anne has struggled with drug and alcohol addiction, and for many of these years, while injecting amphetamines and heroin, her life was controlled by the need to find her next fix.

I knew Anne while growing up in the 1970’s and 80’s. She was my friend’s mom. I remember her as warm and open, striking in her mini-skirts and stylish boots. While she was certainly more Bohemian than my own mother, I had no clue that she was an addict. I never would have guessed at the suffering that was going on in my friend’s home.

Addiction is a disease with enormous financial and human costs: the National Institute of Drug Addiction estimates that substance abuse in the United States costs more than $600 billion annually. Addiction has been linked to increased incidence of cardiovascular disease, stroke, certain cancers, and mental illness. Intravenous drug use accounts for more than one-third of the new cases of HIV, and for the majority of cases of Hepatitis C, which can lead to liver cirrhosis, and in rare cases, liver cancer.

Medical research has only recently started to characterize addiction as a disease of the brain that preys on and alters the limbic system, the brain’s reward center. This has changed various approaches to treatment, and should also temper our judgment of the individuals who suffer from this condition.

Here, Anne, now 67, speaks about her long struggle with addiction. With tremendous courage, she talks about her pain, the pain she caused others, her numerous attempts to get sober and her many relapses. Anne has been sober for seven years now, a huge accomplishment. But her struggle continues because addiction is a chronic, lifelong disease.

Originally published by WBUR Commonhealth Blog, October 14, 2011

Resources:

To learn more about substance abuse, visit

http://www.mayoclinic.com/health/drug-addiction/DS00183

To learn more about treatment options, visit

http://www.helpguide.org/mental/drug_abuse_addiction_rehab_treatment.htm

1-800-662-4357 is the 24-hour, free, confidential, and multi-lingual National Helpline and Treatment Referral Routing Service for individual and family members facing substance abuse.

http://www.samhsa.gov/treatment/natHelpFAQs.aspx

On March 19, 1991, Larry Brennan broke his neck.

He was 18 years old and suddenly paralyzed. He’s had to use a wheelchair ever since.

At the time of the accident, Larry was a freshman at the University of Massachusetts Amherst; he was in the Bahamas with friends on spring break. The details of the accident are fuzzy, he says, because he was intoxicated at the time, having been on a “booze cruise” all day. He remembers running down the beach, then nothing else. According to his friends, Larry dove into the water. The impact broke his cervical spine.

Initially, when his friends saw him lying face down in the water, they assumed he was snorkeling, and it was several minutes before they realized he was in trouble. He wasn’t breathing when they pulled him out. One of his friends knew CPR, and working with the others, tried to resuscitate him until the ambulance came. Larry coughed up sea water and started to breathe again, but his heart stopped and restarted numerous times before help arrived.

Larry was raised in Wakefield, Massachusetts. In high school, he was a popular, 6-foot-4-inch athlete. He played football and tennis, became an accomplished skier and had many friends. As a freshman at UMass, he was flourishing, and his spring break trip was a highlight.

The accident damaged his spinal cord at the C 5-6 level, basically his lower neck, leaving him a quadriplegic (meaning he has weakness in all four limbs). He can move his shoulders and his upper arms, but not his fingers, and he’s completely paralyzed from the upper chest down, with total weakness in his core trunk muscles and legs. However, Larry’s injury is considered “incomplete” in that his sensory nerve fibers were spared and his sensation is intact. For this, he feels lucky.

Here, Larry talks about coming to terms with his injury and learning to live a productive, happy life — though one he says he wouldn’t wish upon anyone else. He finished college at UMass Boston six years after his injury. Now, he lives alone with his service dog Emmie, and gets help from a home aide. He works full time as a Senior Development Officer at Massachusetts General Hospital; goes on dates, skis and sails, and still hangs out with his high school buddies. As Larry puts it, “the biggest thing for me is that I live a full and active life — similar to how my life would have been had I not been injured. Now, I can’t walk, but this is not so important to me anymore. I care most about my relationships with friends and family, staying active and having fun.”

In meeting Larry, I realized how little I understood about quadriplegia before our interaction. I never really stopped to consider the day-to-day challenges that someone in this situation faces, and the tremendous strength that it takes to overcome these obstacles. Moreover, meeting Larry has made me think about how our fears of the unknown can hinder true and genuine connection in life. When I first met Larry, I was nervous, checking myself, wondering how to be. Should I try to shake his hand or will this make him uncomfortable? Should I offer him food and drink during our meeting or will that be too hard? And so on. Larry has taught me that it is better to just ask, to be direct, and not to let these mundane, functional issues get in the way. Larry has no hang ups about these things, so why should I? We just do some things differently, and that’s all.

Originally published on WBUR Commonhealth Blog, March 9, 2012

Resources:

http://www.mayoclinic.com/health/spinal-cord-injury/DS00460/DSECTION=symptoms

http://www.nytimes.com/health/guides/disease/spinal-cord-trauma/overview.html

http://www.spinalcord.org/resource-center/

Photo Credit: Mark Hunt

At 44, Karin had a successful career and three nearly-grown children. Then, in 2004, she began a relationship that at first felt dreamy but slowly deteriorated. Eventually, Karin found herself in a position she never imagined: as the victim of domestic violence. Initially, her partner seemed lovely. He was a respected member of her community, well known for his dedication to volunteer work and he was amazingly attentive and romantic. 

Over time, though, the relationship changed. It was a gradual progression spanning four years, starting with emotional and psychological abuse, and eventually escalating to physical abuse.

Here, Karin bravely shares her story of surviving domestic violence.

It’s a narrative that illustrates how insidious this process can be, and how difficult it is to get out of such relationships. As a survivor, Karin has struggled with her own shame and the guilt she feels for exposing her children to this situation. Today, after a lot of hard work and self-reflection, Karin feels stronger than ever. “I was determined to come out of this kicking,” she said. “And I have.” She has a great job and volunteers for a domestic violence prevention organization; her grown children are doing well and she is newly married. Karin’s story is a reminder that this could happen to any of us, and underscores the importance of trusting your own instinct about what feels right and what feels wrong in a relationship.

Domestic violence, defined by the United States Department of Justice “as a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner” permeates our culture. It is estimated that at least 1 in 4 women in the United states will experience domestic violence in their lifetime, and while both men and women can be targeted, the victim is female 85-95% of the time. Domestic violence occurs across all races, ethnicities, socio-economic backgrounds, sexual orientations and religions. Abuse, based on fear and intimidation, can be physical, emotional, psychological, economic, and/or sexual.

On a societal level, the costs of domestic violence are tremendous. Health related costs alone are estimated to exceed $5.8 billion annually. As in Karin’s case, domestic violence typically escalates over time. Homicide is often the end result. It is believed that 33% of all female murder victims are killed by in intimate partner. For the most part, these homicides are predictable and preventable. By educating ourselves about the issue, we can all become a part of the solution.

Most importantly, Karin wants everyone to know that resources are available. If you have any concerns, seek help.

Originally published on WBUR Commonhealth Blog, October 12, 2012

Resources:

For information, services and help for yourself or someone you care about:

The Domestic Violence Services Network, Inc. http://www.dvsn.org 1-888-399-6111

1-877-785-2020 is a 24-hour, free and confidential multi-lingual domestic violence hotline in Massachusetts

To find the domestic violence program nearest you outside of Massachusetts, call the National Domestic Violence Hotline: 800-799-SAFE (800-799-7233).

To learn more about domestic violence and sexual assault, visit

http://www.ovw.usdoj.gov/domviolence.htm

http://www.janedoe.org/learn_more/what_is_dv#What_abuse

To find programs that help people who abuse/control their partners, visit

http://www.janedoe.org/know/know_resources.htm

Chris is a 38-year-old Ph.D. student who spent 10 years struggling with and fighting against his psychotic illness. His condition has been hard to diagnose — it’s been characterized as Bipolar and Schizoaffective Disorder at various times. Regardless of the specific diagnosis, the bottom line is the same: Chris has a lifelong mental health condition. He hears voices, and has suffered from paranoia, depression and mania along the way.

His symptoms started when he was a 25-year-old grad student in New York City. Before that, according to his mother, Eileen, he was extremely high functioning — an excellent student, an athlete and a friend to many. She would never have suspected that her son would become ill. But when he grew paranoid and started acting erratically, Eileen began to worry. Ultimately, when she realized how sick her son had become, she knew she had to act. She quickly learned how difficult it is to get help for someone who is mentally ill but over the age of 18. Eventually, after multiple frustrating and unsuccessful attempts to get Chris into treatment, she was told “you need to find three strong men who love him, and you need to go get him, and you need to take him to a hospital,” and this is what she did. Eileen’s story highlights the challenges of navigating the mental health system and of accepting and ultimately embracing her son’s medical condition.

These days, Chris says he is in a different and better place. He has accepted his illness and has learned to manage it with medications, therapy and his support systems. Like any chronic condition, it requires constant monitoring, but he feels equipped to handle the ups and downs and he has become quite skilled at recognizing his symptoms and titrating his medications in response. He is now a Ph.D. student at the University of New Hampshire’s Natural Resources and Earth Systems Sciences program, where he is integrating environmental economics with his background in environmental sciences and engineering. He is engaged to be married and will soon gain a step-daughter. Though his illness complicates his life, he has learned to live with it while maximizing his happiness and productivity.

Unfortunately, and despite much talk to the contrary, mental and physical health problems are treated very differently in our society. We marginalize the mentally ill, and often fail to see the individual underneath the diagnosis. In so doing, we make it hard for such individuals to seek help and to move forward.

Why this double standard? Why the stigma? For many of us, it is easier and less scary to imagine losing physical capabilities than it is to imagine losing control over our mind, even temporarily. In fear, we distance ourselves and see the mentally ill as “other”. This distancing is detrimental on an individual and a societal level. Instead, we should listen and try to understand, and focus on our similarities instead of our differences.

Originally published on WBUR Commonhealth Blog, February 22, 2013

Resources:

To learn more about bipolar disorder, visit

http://www.mayoclinic.com/health/bipolar-disorder/DS00356

http://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml

To find information or support for yourself or someone you care about, visit

http://www.dbsalliance.org/site/PageServer?pagename=education_bipolar

For resources focused on families or friends of those suffering from bipolar disorder:

http://www.heretohelp.bc.ca/workbook/family-toolkit

http://www.helpguide.org/mental/bipolar_disorder_family_friends_support.htm

To listen to more stories of individuals living with bipolar disorder, visit

http://www.nytimes.com/interactive/2008/07/16/health/healthguide/TE_BIPOLAR_CLIPS.html?ref=healthguide&_r=0

Zachary went through puberty twice, first as a girl, then as a boy, after he started taking hormones. “The second time was a lot better,” he said. “I got excited when my voice cracked, and when I started to smell different,” though he adds that excitedly telling friends that you smell really bad is kind of a conversation killer..

Zachary is transgender. He was born female but he has always known, even before he could articulate it, that he is male. His journey has been challenging, and he suffered from depression for many years as a result. But he is now a confident, happy, inspiring young man

Last month, Zachary, 19, graduated from Methuen high school. He’ll start Wheelock College in the fall, where he has received the four-year, $20,000 annual Passion for Action scholarship for his demonstrated commitment to community service, leadership and scholarship. He plans to become a social worker with the goal of working with LBGT (lesbian, gay, bisexual, and transgender) kids.

Medically, a transgender person can choose to pursue hormonal treatment and/or surgery in order to bring the biological sex closer to the gender identity, though no intervention is a necessity. For female to male trans people, like Zachary, the surgical options include removal of the reproductive organs, “top surgery” (mastectomy), or “bottom surgery” (construction of male genitalia). For now, Zachary has chosen to pursue hormones, removal of his uterus and ovaries and top surgery, but doesn’t feel that he needs to have bottom surgery. He stresses that this is a personal decision, and that no two transgender people are the same.

Sexual orientation among transgender people is equally varied. Zachary identifies as bisexual. He has dated females in the past and currently has a boyfriend who is a female to male trans like himself. Their shared experiences have brought them very close.

I have learned a tremendous amount from Zachary. I now better understand that people are born with a biological sex and a gender identity, and that these don’t always match up. Trying to ignore ones gender identity, or to force it to align with ones biological sex when this doesn’t feel right, is painful and psychologically detrimental. To feel whole, gender identity must be embraced, but when there is incongruity between biological sex and gender identity, as is the case for transgender individuals, society doesn’t make this easy.

Most importantly, Zachary has taught me that we all need to educate ourselves and develop tolerance toward transgender individuals. He is a person with tremendous courage and integrity, but he has been forced to deal with a more difficult set of decisions than most of us, and with societal discrimination.

This week, the Joint Committee on the Judiciary in Massachusetts held a hearing to determine the future of the Equal Access Bill.

This bill would add “gender identity” to the Massachusetts civil rights law for public accommodations. As it stands, this law prohibits discrimination on the basis of “age, race, creed, color, national origin, sexual orientation, sex and marital status” in public accommodations, but does not protect transgender individuals. Put simply, this means that Zachary could be denied service or treated unfairly in a restaurant, an airport, a retail store, a public bathroom, on public transportation and so on. According to a national transgender discrimination survey published this year, up to 50% of transgender individuals in Massachusetts have experienced verbal harassment or mistreatment in public accommodations.

Originally published on WBUR Commonhealth Blog July 12, 2013

Resources:

For general information:

http://www.glaad.org/transgender

http://community.pflag.org/staff/transgender

For parents and families:

http://www.imatyfa.org/resources/parents/

Photo credit: Marilyn Humphries, Greater Boston PFLAG

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths.

With an incubation period of 2-14 days, only one in five people infected will develop symptoms, most commonly fever, body aches, joint aches and other relatively minor ailments. Less that 1% of infected individuals develop serious and at times fatal neurologic illness, including encephalitis and poliomyelitis, like Charlie. While the odds of serious illness are low, the consequences can be devastating. Without any viable treatment options or a vaccine, prevention is essential.

West Nile isn’t something we typically worry about, but after hearing Charlie’s saga, I know I will be more conscientious about covering up, applying mosquito repellent and staying indoors during peak mosquito hours during the summer months.

More importantly, Charlie’s story has taught me a lot about the power of a positive attitude in healing. In coming to terms with his lasting physical deficits, he also acknowledges that there are some things he now does better than he did before his illness. For instance, in learning to use his hands again, he feels his piano playing has improved. In his words, “I now hit the notes more accurately than before I got sick.”

Charlie would like to express his tremendous gratitude to the medical institutions where he received his care, Massachusetts General Hospital and Spaulding Hospital for Continuing Medical Care in Cambridge. In his words, “They saved my life and made it worth living.”

Originally published on WBUR Commonhealth Blog, January 17, 2014

Resources:

http://www.cdc.gov/westnile/index.html

1-888-246-2675 is the Centers for Disease Control and Prevention information helpline for the West Nile Virus and is open 24 hours a day. It is also available for Spanish speakers (1-888-246-2857) as well as those who are hearing-impaired (1-866-874-2646).

In April 2014, Sue Levy shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, she shares her story of navigating infertility, a journey that started years before, but ultimately was informed by, her LAM diagnosis.

Sue, now 37 and married with two young daughters ages 18 months and four years, underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.

A couple is deemed “infertile” when they are unable to conceive after one full year of unprotected sex. In the U.S., approximately 11% of women 15-44 years of age have a difficult time getting pregnant or carrying a pregnancy to term, according to the CDC. While the use of Assisted Reproductive Technology is much more common today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.

Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the ones she has now. Her story reminds us that although our plans don’t always unfold as we had hoped, we can find unexpected joy and beauty along the way if we open ourselves up to the possibilities.

Resources:

http://www.health.harvard.edu/topic/infertility-resource-center

In 2010, Kate, a single mom from New Hampshire, gave birth to Brook, a healthy baby girl.

Brook seemed to be developing normally and reaching all of her milestones — learning how to sit up and roll over, grasping at toys–until she was 6 months of age, at which point she started to regress. She lost skills she had already learned, and gradually, Kate noticed other things. Brook didn’t seem to respond to her name, she would fixate on lights and just stare and stare, she started dropping toys, unable to hold onto them. Eventually, after a long medical work up, Brook was diagnosed with Tay Sachs disease in 2012, and Kate was told that her daughter would most likely not live past her fourth birthday.

Today, Brook, is three years old and requires constant care. She is blind. She cannot swallow and is fed through a feeding tube. She is having near constant seizures. And she continues to deteriorate. Brook’s older brother Jake, born to a different father and now 9 years old does not suffer from the disorder.

Listen above to Kate’s story of living with and caring for her terminally ill daughter.

Tay Sachs is a fatal genetic disorder. A child is born with Tay Sachs when he or she inherits two damaged copies of the HEXA gene on chromosome 15 (one from each parent), which results in a deficiency of the Hexosaminidase A enzyme and the subsequent build up of a damaging fatty substance in brain cells. The result is a relentess, progressive loss of physical and mental functioning and eventually, death.  A person with one damaged gene and one normal gene will become a carrier with no clinical symptoms of the disease. If two carriers have children together, there is a 25% chance of giving birth to an affected child with each pregnancy.

Tay Sachs, a rare disease with an incidence of approximately 1 in 320,000 in the general population, occurs with increased frequency in certain populations, including Ashkenazi Jews, French Canadians, and Cajuns (from Louisiana). In these groups, approximately 1 in 30 individuals is a carrier, and 1 in 3,500 children will be born with the disease.

Kate, who is of French Canadian descent, had no idea she was a carrier before Brook’s diagnosis. She knew nothing about Tay Sachs, and was unaware that French Canadians are at increased risk. Though pre-conception counseling is available, Kate didn’t know this at the time, and if she had, she might have assumed that it wasn’t relevant to her.

How does a mother manage life when her child is dying? She mothers. Kate spends most of every day in her living room with Brook, an oxygen machine hissing in the background, surrounded by pill bottles, suctioning her daughter’s secretions, moistening her lips, and giving her medication to temper her seizures. Kate’s primary goal is to keep Brook as comfortable as possible in her last days, and she works very hard to achieve this. “So many people for so long would say, ‘You’re so amazing, I don’t know how you do this; This is incredible, how do you manage this,’” Kate says “I would look at them and think, ‘This is my daughter, how can I not do this?’” And every day she tries to spend as much time as possible with her older son, Jake, and to support him through the loss of his sister the best she can.

Story first appeared on WBUR’s CommonHealth blog on November 8, 2013: http://commonhealth.wbur.org/2013/11/extreme-mothering-child-tay-sachs

Photograph: Mary White photography

Resources:

http://www.mayoclinic.org/tay-sachs-disease/treatment.html

http://www.ntsad.org/

Putting the pieces of pain together can’t be done by just asking, “Where does it hurt?”

I have always been somewhat accident-prone. Each time I tripped and fell as a child brought the same routine. I would sit on the edge of the tub in my parents’ bathroom with a bleeding knee and a tear-streaked face as my mom or dad got out the Band-Aids, Neosporin, and the despised hydrogen peroxide (it stung too much when it fizzed). I would point to the scrape and roll up my sleeve to reveal any other “boo-boos.” I would leave their bathroom with my lacerations clean, my face dry of tears, and feeling okay, albeit a little achy.

Nearly fifteen later, as a sophomore in college, I shadowed Dr. X every Wednesday afternoon for the practicum component of a semester-long course on Medical Professionalism. In Dr. X’s office, many patients would come in with a laundry list of pain, soreness, discomfort, and hurt. The question “Where does it hurt?” seemed insufficient to understanding their pain fully. The patient may have struggled to push back on Dr. X’s hand with their face. They sometimes found it difficult to answer inquiries such as, “When did the pain start?” or, “Is it radiating?” All of these are pieces of the understanding required to provide adequate and appropriate treatment. Doing so demands the asking the patient multiple pointed questions while also testing them physically. This understanding appeared to be elusive and difficult to acquire for three main reasons: time, creativity, and trust.

Time

During my Wednesdays with Dr. X, I often noticed a tension between the care patients want and the realities of care in our current healthcare system. Patients would often try to show her pictures of their grandchildren or a recent vacation. Sometimes, they, an aging parent, wanted her to explain over the phone what was wrong with them to a concerned child who could not make the appointment. She always obliged as best she could but the system in which she provided care made it difficult. Dr. X was known in her practice for seeing roughly half as many patients as her fellow physicians. She often mentioned to me how difficult it was to accommodate these seemingly irrelevant components of a patient visit when they were often what made the patient most comfortable and most inclined to tell their story.

The doctor’s visit with the patient can only last so long, for other patients need care too, and there are only so many hours in the day. Thus, even when the “right” questions are being asked, patients may not have the opportunity to fully translate their feelings, aches, and pains into words with context (a mosaic of experiences, emotions, environment, and everything in between). As a result, it is challenging to gain a strong understanding of what they are experiencing and subsequently make a suggestion about how to treat their condition(s).

Creativity

I often noted Dr. X’s inventiveness on our Wednesdays together, inspired by her ability to ask questions that led her closer to a diagnostic truth regarding the patient’s experiences. Sometimes people are insecure about their diets, how much they exercise, how often they take a prescribed medicine, and other areas of their lives in which they are not perfectly compliant with doctors’ orders. Thus, we are less likely to offer responses to a provider’s question that allow them to help us, for we are trying to protect ourselves without even realizing it.

This reminds me of visits to the dentist. When the hygienist asks if I’ve been flossing as she scrapes and polishes my teeth, I know that I have to be honest because she has the proof right in front of her. But we all often lie, feeling sheepish for not doing what was asked of us.

Sometimes a matter-of-fact question like, “Do you go to the gym regularly?” is sufficient for a useful answer that guides the doctor to a diagnosis. However, sometimes it seems more appropriate and productive to ask, “What is your daily schedule?” This gives the patient a chance to tell the doctor what they want, be it that the entirety of their exercise regimen consists of walking to work, or that they stop at Chick-fil-A on their way home for dinner. Although this question may not have appeared at the start to have a direct correlation with healthy eating/regular exercise, it may make the patient more comfortable and allow for a more organic conversation. When Doctor X asks more flexible and open questions, this allows for more creative and varied responses that are generally more constructive toward devising a care plan.

Trust

Meeting a patient where they are in a non-judging, kind, and sensible manner, they are much more likely to open up and let the provider know what hurts and how they feel. I trusted my parents to clean my wounds after a fall off my bike and bandage me all up, pointing them to the areas in need of a little love. Similarly, I observed Dr. X’s patients explain pain “at a level eight” that keeps them up at night with a trust that she will take their words and turn them into a diagnosis and treatment that gives them relief.

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Although all patients are different, everyone expects individualized care from their doctor and are usually hoping to be healed. Time, creativity, and trust are crucial pillars that support how the provider meets their patient’s needs by putting their symptomatic puzzle together into a diagnosis.

When I was a little girl, I expected my parents to take my skinned knee and clean it up so that I was good as new. With Dr. X’s patients, their complicated aches and pains require more than just a Band-Aid, but she does have the power to offer them solace. I hope one day to be able to provide antidotes for my patients’ pain, and will strive to ask questions that allow me to do so.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.