Advocating for Others

Last month we looked at self-empowerment and how to advocate for yourself, as a patient, and help your community members to do the same for themselves. This month we’re going to look at another type of advocating that has a whole different set of challenges, rules, and definitions of success: advocating for others.

Caregivers are a unique set of Health Activists who use their detective work, self-education, question-asking, and awareness-raising skills to advocate for the health of loved ones. These Health Activists dedicate their time to caring for a diverse list of people they love: be it their children, family members, parents, significant others, or close friends. Some Health Activist carers advocate for more than one person, keeping their whole family’s health in check. All caregivers work tirelessly (and, sometimes it truly is work – and not easy) to improve the lives of those they care for who may be living with chronic health conditions. They all have different stories to tell, but like patient Health Activists, they offer honest and powerful approaches, and are an inspiring bunch whose voices need to be heard by the greater healthcare community.

Whether you’re a parent who cares for a child with a chronic health condition or care for your spouse or another relative – you have a special set of skills that should be understood, celebrated, and shared. So let’s do that this month. Are you a blogger who writes about caring for your kids? Are you a tweeter who shares resources with fellow caregivers? How has your journey from individual knowledge-seeker translated into caregiver? What challenges do you face as someone who advocates for others? What have you learned along the way that surprised you? What support do you need when things get tough? How do you find it? Do you advocate for yourself as a caregiver?

We hope you’ll join us in reaching out and supporting all the many types of Health Activist carers this month and connect across conditions to learn from each other. Here on the blog we’ll be collecting resources, sharing stories, and highlighting some of the amazing carers in our online community.

 

 

12 thoughts on “Advocating for Others

  1. When I started out doing consumer and patient advocacy in health IT public policy I was pretty much the only one there.. It is so amazing to see all of the patient advocates come together with those of us who advocate for others in the somewhat arcane world of health IT public policy.

  2. when mom was dx wit brc=1; i advocated. it was years too late; due to errors; now 20 years i am mediator/ombudsman for elderly 

  3. when mom was dx wit brc=1; i advocated. it was years too late; due to errors; now 20 years i am mediator/ombudsman for elderly 

  4. when mom was dx wit brc=1; i advocated. it was years too late; due to errors; now 20 years i am mediator/ombudsman for elderly 

  5. Silence Must Be Heard    5:20    Enigma    The Screen Behind The Mirror a song

  6. Anonymous says:

    Interested in seeing how others transition into caregiving for parents and the changing parent/adult-child relationship. This is less a matter of any specific chronic health condition than that of geriatric medicine in general and late-life-associated muscular, sensory, and/or cognitive decline.

  7. Lynn Nezin says:

    I have been a health advocate for the past twenty years in support of my son with Glycogen Storage Disease Type 1A, as well as for other families with affected children. The challenges of raising a child with special medical needs is magnified when dealing with an orphan disease — the ongoing terror of dealing with medical staff who have only heard of the condition, but never treated it, the incredible metabolic fragility of our children when they are in crisis, and the discomfort of friends and family who can’t accept that this child will be coping with this disease for his or her entire life, despite appearing well and healthy.
    I have had great gratification in helping other families obtain critical benefits for their children with GSD by not hesitating to articulate the life-threatening aspects of this condition. I usually warn the parents that I will use dramatic language to make my point: our children are at daily risk of seizure, coma, and death if their metabolic needs are not met. I take no pleasure in the drama, but accept that it is a necessary strategy to emphasize the seriousness of this condition.
    I am also extremely grateful to our son’s pediatrician and endocrinologist for their compassion, understanding, and intelligence in helping us all survive this disease. The result? Our son is entering his third year in an honors college as a straight A student, and managing his medical needs in a mature and responsible manner on a daily basis.

  8. Kent Norton says:

    I distressed and in grief for two young people who have taken their own lives in the last week: one a teenager, one a metaphysical driven girl who could not cope with setbacks in finance and living arrangements. I am advocating music as a healing tool in such trauma events. References
    as music could be the answer as even the brain dead/damaged can be re-ignited as music is distributed in the whole brain.

    In France, Dr. Rene Laennec (1781-1826) was a flutist who was known to build his own wooden flutes. He later went on to invent the first stethoscope—a long hollow tube made of wood [2]. Roguin A. Famous names and medical eponyms: Rene Theophile Hyacinthe Laënnec (1781-1826): The man behind the stethoscope. Clin Med Res. 2006;4(3):230-235.

    #medicalMusician medical musician critical care life saving musical therapist: a new term. #bethIsrael #trauma http://journalofethics.ama-assn.org/2014/08/mhst1-1408.html

    the neuro physiological power of music can be mapped by the fMRI to show that healing can occur with music

    https://www.youtube.com/watch?v=sFHXWoawnt0

    Lisa M. Wong, MD, is an assistant clinical professor of pediatrics at Harvard Medical School in Boston and has been a pediatrician at Milton Pediatric Associates since 1986. An active musician, she performs with the Longwood Symphony Orchestra, of which she was president for 20 years. She mentors musical premedical and medical students and is a founding member of Arts&Humanities@HMS. Dr. Wong’s first book, Scales to Scalpels: Doctors Who Practice the Healing Arts of Music and Medicine, was published by Pegasus Books in 201

    Sunderman WF. Theodor Billroth as musician. Bull Med Libr Assoc. 1937;25(4):218.

    Roguin A. Famous names and medical eponyms: Rene Theophile Hyacinthe Laënnec (1781-1826): The man behind the stethoscope. Clin Med Res. 2006;4(3):230-235.

    Gillespie WF. Doctors and music. Can Med Assoc J. 1935;33(6):676-679.

    Tom Südhof [interview]. Lancet. 2010;376(9739):409.

    Roses D. Brahms and Billroth. Amer Brahms Soc Newslett. 1987;V(1):1-5.

    The leisure corner. JAMA. 1953;152(10) 964-965.

    Roses, 2.

    Fielding HG. Medical men who have loved music. Musical Q. 1921;7(4):527-548.

    Roses, 3.

    Davidoff F. What musicians can teach doctors. Ann Intern Med. 2011;154(6):426-429.

    Gardner L. Billroth and Brahms–a study in science and music [video]. Lee Sedwick Production; 2013. http://vimeo.com/65902000. Accessed June 26, 2014.

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