Send This Story
Take Your Health Into Your Own Hands
Atlanta women are finding the power to be active participants in their care.
by Mary Anne Dunkin
September 1, 2005
S
usan Kendrick [not her real name] was on along-term work assignment with a news
organization in London when she began to experience perplexing symptoms. She found herself
increasingly forgetful, often dizzy and unable maintain her balance.
"I rode the subway almost everywhere I went, and I couldn't keep my
balance," says Kendrick. "When it would move, I could not standup." Cobble stone streets presented
a problem too, she says. "I fell a lot and really messed up my knees."
If forgetfulness and balance problems weren't enough, she experienced unusual sensations
such as tingling in her hands and feet, and other times when she couldn't feel hot or cold. "I
could have the shower on as hot as it would go and it wouldn't even feel warm," says Kendrick.
Feeling like her life was draining out of her, Kendrick saw a doctor in London who suspected
multiple sclerosis (a degenerative disease in which the immune system destroys the covering of the
nerve cells), and began the necessary diagnostic tests. When the tests came back negative, he
suggested she see her own doctor when she returned to the States. But while coming home to Atlanta
meant more doctors and more tests, it yielded few answers until Kendrick began her own research on
the Internet.
"I found a Web site where you could enter your symptoms and it would come up with a list of
conditions that matched them," says Kendrick. "When I put in my symptoms, at the top of the list
was pernicious anemia."
With a name for her problem, Kendrick searched the Web for information on this blood
disorder caused by alack of vitamin B 12. "Everything I read about it matched me perfectly," she
says.
When she took the information to her doctor, he agreed with her suspicions and ran the blood
test that confirmed the diagnosis. He then referred her to a neurologist for treatment.
The treatment - monthly injections of vitamin B 12 - made a dramatic difference. "It was the
difference between black and white; that's the best way I can describe it," says Kendrick. "All of
these feelings came back and I could feel hot and cold again."
Still, some of the damage the disease had done was beyond repair. Four years after her
diagnosis, Kendrick continues to have problems with balance, which recently caused her to fall and
break a wrist, and difficulty remembering, which forced her to give up her demanding job in a
fast-paced newsroom.
Would an earlier diagnosis and treatment have made a difference? Kendrick doesn't know. Nor
does she dwell on what-ifs. Instead, she is pursing a life-long love of drawing and painting and
serves as a lay counselor at her church, helping other women who are facing chronic health problems
and teaching them to be advocates for their health care.
Connie Siewert, a business writer and marketing consultant in Lawrenceville, was traveling
with her family to see relatives in Minneapolis when an allergy attack necessitated a trip to the
nearest emergency room. "It was scary because even though I had had a lot of congestion with
allergies, I had never experienced such a shortness of breath," she says.
In the emergency room, Siewert was diagnosed with asthma and given an inhaler. When she
returned to Atlanta, her family doctor went along with the diagnosis. At first, periodic steroid
injections were sufficient to control attacks. But over time the problem got progressively worse,
so that her doctor prescribed a daily dose of prednisone, a strong antiinflammatory hormone with
along list of potentially serious side effects. "A light bulb went off in my head," says Siewert,
"and I thought, 'Oh my gosh. I'm going to be committed to taking a pill every day for the rest of
my life.'"
That's when Siewert decided to search for other options. Her search took hert o a wide array
of alternative health practitioners, across the Web and through a buffet able of treatments.
Eventually she decided not to take the prednisone, but opted for amore holistic plan that included
change in diet, avoiding foods like milk and wheat that affect her lungs, drinking lots of water
and doing deep breathing exercises.
The results have been well worth the effort, says Siewert, who wrote about her three-year
journey to wellness through alternative sources of information and healing in The Skeptic's Guide
to The Adventures of Life (Expanded Thought Press, 2004).
"I used to have a lot of sore throats. I used to have to take steroid shots two to four
times a year, but I no longer need them. My breathing has improved considerably."
Sticking to her new treatment regimen isn't always easy, she admits. "It takes more
discipline when you don't have the quick fix of a pill," Siewert says. "You're more involved in the
healing process. You have to do a lot more and that doesn't come naturally to me. But I can see the
difference when I do them. My health improves."
Although Kendrick's and Siewert's situations are much different, their stories have a common
thread. Both tell of a generation of women who are actively taking a role in their own health care,
and, in these women's case, encouraging other women to do the same.
All but gone are the days when women waited patiently for the doctor to tell us what
was wrong, what we should do for it, and then executed those orders without questioning.
Increasingly, Baby Boomers and Generation X-ers are requesting tests, demanding answers and, when
answers aren't forthcoming, looking for them on our own.
Whether it's reaching a difficult diagnosis, finding the right health care provider or
choosing the best medication for you, you have a right -even an obligation to yourself - to be
involved in the process, says Sally Beer, a cardiologist with Cardiac Diseases Specialists in
Atlanta. "Remember the Syms commercial that says 'an educated consumer is out best customer,'" she
says. "That really applies to health care."
Certainly there are times, say if you are unconscious or in the throes of a life-threatening
emergency, you have no choice but to go along with what the doctor thinks is best for you. But more
often than not, you have the presence of mind and the luxury of time to conduct some research, ask
questions and discuss tests and treatment.
Oftentimes women must be the ones to initiate such discussions with their doctors according
to research from the Morehouse School of Medicine which shows discrepancies between health care in
men and women. Researchers have found that doctors are less likely to talk with women about their
symptoms or risk factors for a heart attack or stroke, or to prescribe preventive measures,
probably because of the perception that women don't have heart problems at an early age, say the
study's authors. And when women end up in the emergency room with heart problems, their treatment
may differ from men's as well.
The best time to discuss problems is before they happen, says Beer. "Get your cholesterol
checked. Know what your blood pressure is. Don't just ask if your numbers are OK; know what they
mean. If your doctor tells you something vague, like 'you have a heart problem,' ask for a label
for the problem so you can look it up and get more information. Ask if you have risk factors for
heart attack, and ask for warning signs or symptoms that you may be having one. Ask about
medications you may take or lifestyle factors you can change to reduce the risk."
Doing these things may not only reduce your risk of problems, but will provide you with
important information to share in the event you do end up in the emergency room with a problem.
"You have to know about yourself," says Beer. "You can't expect anyone else to be clairvoyant."
Be An Advocate And
Partner
If we all could be patients of "Marcus Welby, MD," initiating discussions of important
health matters or demanding tests wouldn't be an issue. In the 1970s TV hit, the kind doctor always
knew what to do. He was always right, he was always caring, and whatever problems his patients
faced, he or his handsome young partner, Dr. Steven Kiley, could solve them to everyone's
satisfaction before the closing credits.
But real life isn't so easy. Rushed appointments, long waits for specialists, drugs with
dangerous side effects and a dizzying array of treatment options mean getting the best care often
requires more than a doctor who cares. Rather than being a passive patient, you must be an advocate
for yourself. You must be willing and able to communicate your needs to your doctor and consider
yourself a partner with her in your care.
Many studies show that working in partnership with your doctor, rather than as a passive
patient, pays off in better health. In a 2000 study of 315 patients seeing family physicians, for
example, researchers showed that patients who were involved in treatment decisions recovered more
quickly, had better emotional health and required fewer diagnostic tests and procedures.
In an earlier review of published studies on doctor-patient communication, 16 of 21 studies
found that good communication between the doctor and patient correlated strongly with improved
health for the patient.
Doctors, too, should take note. A paper published earlier this year suggested that when
clinicians shift their mindset from one of getting patients to comply to becoming a partner with
their patients, patients are more likely to stick with a treatment plan and experience health
improvement.
"Taking a step toward being responsible for their own status and health care is something
you can do for yourself," says Ann Travis, a practicing physician and past president of the Georgia
Academy of Family Physicians. Fortunately, an explosion of health information that has coincided
with advances in medicine has made it easier than ever to take a role in our own health care, she
says. "We live in a wonderful time that allows us to be a partner with our physician in our health
care. I encourage my patients to read as much you can, find as much as you can. If you see
something that we haven't talked about or is not in the materials I have given you, bring it to me
and we'll discuss it," says Travis.
Use The Internet
Like almost half of all Americans, both Siewert and Kendrick turned to the Internet when
they needed information about their medical conditions. While Kendrick's experience, in particular,
shows the Web can be a source for valuable or even life-saving information, experts advise using
caution and common sense when evaluating what you see on the Web. There's a lot of good
information, but there is also a lot misinformation, says Beer. "Do your research and gather your
information, but then discuss it with your doctor. Education is valuable, but a little information
can be a dangerous thing," warns Beer.
The Ultimate Expert: You
In the three years preceding her diagnosis and the four subsequent years, Kendrick has
learned a lot about making the most of her time and her partnership with her doctor. To help your
doctor better help you, she recommends the following:
Keep a journal of your symptoms-particularly if you have trouble remembering them - and
bring it to your office visit. Even if you don't have time to go over them at the visit, hit the
high points and have the doctor put your notes in your file.
Discuss different treatment scenarios. If Plan A doesn't work out, discuss a stragegy for
Plan B.
Come with a list of questions and go over the most pressing ones first. That way, you won't
get home and think, "Why didn't I think to ask that?"
Find out about your treatment. What results should you expect, and when? What side effects
should you be aware of and which ones require immediate attention, or can be ignored?
Most of all she says, "Be assertive. If your doctor talks down to you, doesn't take your
problems seriously or doesn't want to answer you questions, find another doctor."
Regardless of the type of doctor you have, the ultimate responsibility for your health lies
with you, says Connie Siewert. "Everyone is different," she says. "That's why it's important that
you are your own health advocate. Your doctor may be the expert on medicine. But no one knows you
like you."
Concierge Practice Provides Continuity of Care
Rhonda Duffy liked her doctor, but she was tired of having to wait days to get an appointment with him. And when she did finally get an appointment, she dreaded the two-and-a-half-hour wait to actually see him. "When I need to see the doctor, I don't want to sit in the waiting room and read a magazine," says Duffy, founder and president of Duffy Realty of Atlanta. "I don't have time for that." Surely, thought Duffy, there had to be a better way.
Duffy found what she is says is definitely a better way when she learned about the Taylor-High Center for Preventive Medicine in northeast Atlanta. Started in April 2002 by Charles Taylor, a former Emory Clinic medical director, and Thomas High, a family practice physician in Atlanta, the Taylor-High Center is one of a growing number of so-called boutique or concierge medical practices popping up across the U.S. Patients - mostly busy professionals like Duffy - pay a one-time initiation fee (at Taylor-High, the fee starts at $1,000 for an individual under 40 and at $2,000 for a young family) that covers an initial, extensive health evaluation. After that, a smaller quarterly retainer covers just about everything patients need, aside from hospitalization or subspecialty care.
"At the Taylor-High Center I can see them whenever I want and talk to them whenever I want," says Duffy. And there's no crowded waiting room. Rather than spending eight minutes with Duffy as her previous doctor did, Dr. High takes time to address Duffy's health concerns and other issues such as family, work and spirituality, that influence her health, she says. "On my second consultation with Dr. High, I spent three hours in his office," says Duffy.
"You just don't have that opportunity in traditional health care where someone has your best interest and knows your family and knows what you're talking about."
Duffy says it' easier to stay healthy with a doctor who takes her concerns seriously and addresses them at her convenience. "It's not like I'm just one of their patients," she says. "I am their patient."
