Beyond the Diagnosis
You're sitting in an exam room. In a few minutes your doctor is going to come in with some news. What will they say? How will that affect you and your loved ones? Beyond The Diagnosis—a three-part, multimedia story—will explore the journeys of three people as they reflect on the setbacks, struggles, and unexpected inspiration that are all part of the battle against life-changing medical conditions.
Seeing a Change
One morning, Bernie, a winegrower and grandfather, woke up and noticed that he couldn’t see out of one eye. He felt no other symptoms, no pain, nothing. “It was as if someone had turned the switch off in that one eye,” he says.
Soon after, Bernie was diagnosed with wet age-related macular degeneration, a condition brought on by a hemorrhage that blocks the flow of light to the optic nerve. That was the earliest symptom of a disease that continues to have a major impact on his life. Bernie’s decision to seek out a physician’s opinion when he first noticed symptoms has played an important role in the subsequent care he’s received.
The uncertainty associated with noticing early symptoms but not understanding their causes can be as debilitating as a disease itself.
Sometimes the cause of a health problem is clear. Other times, it takes years to pinpoint what’s happening in a patient’s body. The uncertainty associated with noticing early symptoms but not understanding their causes can be as debilitating as a disease itself. And yet, studies show that people are going to the doctor less frequently.
Early diagnosis is a crucial step in treating most conditions, especially eye disease. When age-related macular degeneration and glaucoma are found early in the disease progression, 80 percent of cases of blindness can be treated or prevented altogether.1 But it's not just eye disease. Another recent study found that more than 100,000 American lives could be saved per year by increasing use of preventive services.2
For Bernie, learning what was causing the early symptoms of his disease helped him know what he was up against and adapt to his new reality. “Your eyes are the portal to enjoying life,” he explains, happy to still be able to see the world, even if he sees it differently now. Disease compels people to adopt new personal perspectives; healthcare providers and patients alike can learn from these points of view to make better-informed decisions about how to provide, and accept, the best care.
1 (2014). Retinal imaging study to focus on early intervention. Optics.org. Retrieved March 3, 2015, from http://optics.org/news/5/10/17
2 Report Highlights. Partnership for Prevention. Retrieved March 3, 2015, from http://www.prevent.org/data/files/initiatives/reporthighlights.pdf
Living Through Pain
Welcome to chapter 2 of Beyond The Diagnosis—a three-part, multimedia story. Be sure to visit Chapter 1: Seeing a Change if you haven't already.
Growing up, Beverly lived a very active life. She remembers how nice it was, “not thinking what your body was going to do, you just did it.”
When she got to college, things changed. At first, the pain was in her fingers: it hurt to grip things, to start a car. Then it moved to her major joints, and she found simple tasks like reaching for a glass in the cabinet to be excruciating.
For Beverly, a former investigative journalist, living with pain is her new physical reality, it's how she knows she's moving. “Acceptance hit me when I realized there was nothing I could do about it,” she explains. “I realized how much I’d grown from that, 'what can we do to fix it', to 'ok what do we do now to live with it.'“
I think it’s important there is a struggle we go through, but we can still live. That’s my thing. We can still live.
Beverly is not alone. Many like her have been forced to accept a new, long-term physical reality. This can be exceedingly difficult: in one study, almost two-thirds of respondents reported their chronic pain had a major impact on their overall enjoyment of life.3 For Beverly, the pain attached to rheumatoid arthritis plays a major role in the daily decisions she makes. It’s a part of who she is now, and that’s not easy.
Today, 100 million people—nearly a third of everyone living in the U.S.—live with chronic pain. The costs stretch far beyond the physical toll that pain takes on those who struggle with it every day. Recent research shows that the total annual incremental cost of health care due to pain ranges from $560 billion to $635 billion in the United States alone.3
Pain management is not an easy task, and it has a real effect on daily life. Twenty percent of all Americans report that pain interrupts their sleep several nights per week. One in five living with pain rely on disability payments to replace lost jobs or diminished hours due to their condition.
Beverly, for her part, found education to be an important tool for coping with rheumatoid arthritis. Through her own research, and by getting involved in activities with the Arthritis Foundation, she learned to find new ways to meet each new day head on.
“I’ve learned a lot about myself, my inner strength,” she explains. “I think it’s important there is a struggle we go through, but we can still live. That’s my thing. We can still live.”
3 AAPM Facts and Figures on Pain. American Academy of Pain Medicine. Retrieved March 16, 2015, from http://www.painmed.org/patientcenter/facts_on_pain.aspx
Feeling the Impact
Katy says that her life was “pretty perfect” during her mid-forties. So perfect, she almost didn’t realize how good she had it. A diagnosis of metastatic breast cancer changed that perspective; she knew she had a disease that would stay with her for the rest of her life.
The progression from diagnosis to the start of treatment happened fast for Katy: She found out about her malignant tumor on a Tuesday and was on the operating table that Friday.
For Katy, and thousands of other Americans, being diagnosed with an illness greatly affects how they lead their lives, the decisions they make, and the treatment options that they pursue. Often times they have to adjust to their new physical realities quickly. They’re also faced with new, difficult decisions: how to find the highest quality of care, the right doctors, and the best treatments.
But then, somehow the balance shifts, you learn to become stronger… and then one day, you realize, wow, I’ve woken up and cancer wasn’t the first thing on my mind.
For those currently living with metastatic breast cancer—the prognosis can vary widely. Many can live on for years with life-long treatment plans centered on quality of life. There’s also a consistent stream of new resources available for those living with metastatic breast cancer. The Cancer Hope Network4 matches patients and their families with cancer survivors that can help provide perspective on living with the disease, answer questions, and offer support.
Take Charge of Your Treatment
1. Consider your options
While early intervention is a key component to many treatment plans, it's important to take your time to make an educated decision about your health; carefully examine your options and decide what's best for you. Getting a second opinion may also help you feel more confident about your care.
2. Find a support network
You don’t have to go through this alone. Family, friends, and patient support groups can offer support and guidance to help you cope and make informed decisions. Doctor’s offices and treatment centers often have information on local support groups, but if you’re not sure where to start, try healthfinder.gov for more.
3. Personalize your treatment plan
Talk to your doctor about a treatment plan that best meets your needs, considering both therapeutic benefit and quality of life. In addition to increasing patient satisfaction, research5 shows that open communication may have a positive effect on symptoms and can also help uncover overlooked health issues.
4. Seek out verified information
There’s an abundance of health information online, but much of it isn’t based on credible research. It’s important to look for information that’s based on a careful review of the latest scientific findings published in medical journals. Sites such as healthfinder.gov, cdc.gov, and mlanet.org are a good place to start.
5. Get Organized
Any diagnosis carries with it a huge amount of information. Get a binder – or use a digital file system – to keep your health records organized across different providers and specialists. Studies6 show that patients who are more actively engaged in their treatment have better outcomes.
“After you’re first diagnosed you’re living with cancer, every waking minute it’s your first thought in the morning, it’s your last thought at night, it’s in your head constantly,” remembers Katy.
“But then, somehow the balance shifts, you learn to become stronger… and then one day, you realize, wow, I’ve woken up and cancer wasn’t the first thing on my mind, and it wasn’t the last thing on my mind last night, and you’ve had a perfectly normal day.”
For those who have just received a disease diagnosis, it’s this return to normalcy that drives them forward, informing decisions on treatment regimens and daily life.
Coming to terms with any diagnosis can be a life-changing experience. The stories shared by the brave individuals above can go a long way toward helping all of us to make better informed decisions in order to find the best possible care for ourselves and our loved ones.
4 Cancer Hope Network. Retrieved March 30, 2015, from http://www.cancerhopenetwork.org/
5 Weir, K. (2012). Improving patient-physician communication. American Psychological Association, 43, 36. Retrieved March 30, 2015, from http://www.apa.org/monitor/2012/11/patient-physician.aspx.
6 Hibbard J.H., Greene J., & Overton V. (2013) Patients with lower activation associated with higher costs; delivery systems should know their patients' 'scores'. Health Aff (Millwood), 32, 216-22. Retrieved March 30, 2015, from http://content.healthaffairs.org/content/32/2/216.abstract