The signs are everywhere - prescriptions doled out into weekly reminder boxes, blood glucose monitors in a desk drawer, maybe even an adrenaline injection pen stashed in a diaper bag for allergy emergencies. From high cholesterol to HIV, millions of Americans have a medical condition that they manage mostly on their own.
But with so many of us acting as our own daily doctors, how do you know when it's time to call in the professionals?
It's the level of pain that's my signal, if you will, especially in the knees, says Karen Moe, a 46-year-old Minnesotan who works with learning disabled students. Moe has had chronic rheumatoid arthritis for more than a decade. She faithfully takes a combination of prescription medications and dietary supplements, but heads to her doctor when her joints become unbearably swollen. I have learned to listen to my body, and when I don't do what my body's telling me to do, I suffer the consequences, she says.
Feeling bad is a good sign that it's time to make an appointment, but if you have a condition like diabetes, HIV or high blood pressure, you and your doctor should have a conversation about what sort of symptoms require a doctor's visit or how often you should be monitored to make sure your condition is not getting worse.
If you've been diagnosed with a chronic illness, you should expect and ask for a summary of symptoms and things to watch out for, something like the discharge summary you might get when you leave a hospital, says Allen J. Dietrich, professor of community and family medicine at Dartmouth Medical School.
For most conditions, there is a specific checklist of symptoms that should trigger a visit to the doctor, Dietrich says.
"For diabetes patients, some of the signs might be increased urination or needing to drink a lot more, or developing sores on the feet, or sometimes chest pain. For high blood pressure, it might be muscle fatigue or weakness, or if your heart rate is way down. For asthma, it might be a decreased tolerance of exercise or increased use of your rescue inhaler," he says.
For some, the cue to call the doctor is the simple feeling that something has changed, says Dr. Kate Lorig, leader of Stanford University's Patient Education Research Center. It's when all of the sudden you wake up really dizzy, and that wasn't happening yesterday. Or if you haven't changed anything in your diet or exercise, and suddenly your glucose reading is 30 points higher, she says.
The programs developed at the Stanford center help people with arthritis and diabetes manage their symptoms and solve the daily problems that can crop up with their conditions. But Lorig says self-management doesn't mean that they don't see their doctors.'?? The Stanford programs also teach people how to get the most out their medical appointments.
"Your doctor is going to make a presentation, and say this is the treatment I'm recommending, and this is when I want to see you back," Dietrich says. As a patient, you should ask about things that you should monitor and that the doctor would like to know about right away. You also want to ask them to be really clear on the side effects of your medications.
Moe sees a specialist at least three times a year to make sure her medications are working properly. But I also do some research on my own, and there are some drugs that I've said no to. I don't have a blind faith, I have an educated faith, she says.
Carol Brown is a 50-year-old professional home organizer in Arizona who battled cancer and lives with severe asthma. She makes a yearly trip to her doctor and allergist to help control her asthma. "And as a breast cancer survivor, I've been seeing doctors a lot, so I have no compunction about bringing things up,"she says.
Working through the challenges that come with a chronic medical condition is key to staying healthy, according to Russell Glasgow, Ph.D., a senior scientist at Kaiser Permanente Colorado. Glasgow, who has worked with people with diabetes, says successful patients tend to be good problem-solvers.
"One aspect of this is knowing when and how to bring in other resources, be it other people, your doctor, your family or even a librarian," Glasgow says.
Several studies show that people who don't learn to take care of their chronic conditions are more apt to wind up in emergency care. Twenty percent of people who came to emergency rooms in the midst of an acute asthma attack did not know that they could monitor their own asthma symptoms, a recent report found. On the other hand, a 2006 study suggests self-management programs can help heart failure patients lessen their chances of returning to the hospital.
Brown uses a home peak flow meter to keep tabs on her breathing and to determine if her asthma medications need to be adjusted. "With asthma, you can go downhill slow, and not be aware that you're going downhill over time, so the meter can be tremendously helpful," she says. She calls her doctor for further instructions or more steroids when her peak flow measurement falls to 80 percent or less than her high measurement.
She notes, as does Moe, that her doctors never sat down to talk about the kinds of things they should monitor. Both women said they had to figure this out on their own, taking the initiative to ask their doctors directly and look for information from other sources such as the Internet. All patients should discuss emergencysymptoms with their doctors, however, to make sure that they are alert to the most important signs of change.
Some people with chronic medical conditions are leery of taking on their own care, even for everyday problems, says Dr. Terry Porteous, a pharmacy researcher at the University of Aberdeen in Scotland, who has studied how people handle minor illnesses like a backache.
Many people would prefer to skip the clinic appointment but they fear they will make their condition worse or miss a more serious health problem by not seeing the doctor, Porteous says.
"What I would suggest, however, is that most of these issues could be addressed by professionals other than physicians," she says.
Porteous and others point out that sometimes it's not just a question of when to seek help, but who to ask. These days, patients can schedule a quick visit with a nurse practitioner or call their health insurance hotline to talk with an advice nurse, instead of going in for a full-blown medical exam.
Doctor offices vary considerably in how they handle these situations, Dietrich agrees, saying that '??it's a good question to ask your doctor--how do they handle routine questions?
When Brown had chest pains recently she called her health insurance hotline. "It never occurred to me to go to the ER, because I wasn't really thinking straight at the time," she says. After asking a few questions, the nurse sent Brown straight to the emergency room.
"Sometimes when you're feeling really lousy, you can't adequately assess the situation yourself," Brown says.
When to call websites:
Radeos, MS et al. Risk factors for lack of asthma self-management knowledge among ED patients not on inhaled steroids. Am J Emerg Med. 2001 Jul;19(4):253-9.
Hull RD et al. Self-managed long-term low-molecular-weight heparin therapy: the balance of benefits and harms. Am J Med. 2007 Jan;120(1):72-82.
Glasgow RE et al. Problem solving and diabetes self-management: investigation in a large, multiracial sample. Diabetes Care. 2007 Jan;30(1):33-7.
Porteous T et al. Preferences for self-care or professional advice for minor illness: a discrete choice experiment. Br J Gen Pract. 2006 Dec;56(533):911-7.
Newbould J et al. Lay-led self-management in chronic illness: a review of the evidence. Chronic Illn. 2006 Dec;2(4):249-61.
Jovicic A et al. Effects of self-management intervention on health outcomes of patients with heart failure: a systematic review of randomized controlled trials. BMC Cardiovasc Disord. 2006 Nov 2;6:43.
Lorig KR et al. Internet-based chronic disease self-management: a randomized trial. Med Care. 2006 Nov;44(11):964-71.