Remember that friend of yours who always takes more time to research everything, looking into a million options before making a logical decision? How about that other friend who tends to rush into things then regret afterwards?
If you are like the first guess what, you may do better with your medical care and this is published research!
Well, the more engaged patient has some knowledge of their health condition, asks questions, tries hard to follow recommendations, may be looking out for the most recent and applicable research and may be challenging their medical team to consider changes in treatment if necessary, etc. While one does not have to aim at becoming a “star patient” necessarily, there are 4 things I have found to be important, that everyone with a chronic medical condition should know, so they can optimize their health and medical care.
#1: The name of the condition, spelling, basics: Knowing more enables one to pay attention to the press, learning what’s new in research and treatment. One is able to better advocate for themselves in asking their doctor about treatment options, whether things need to change, etc. One may learn about experts in a particular field, potentially for a second opinion if the need ever arises. For example, someone with a rare kind of cancer, may benefit from a second opinion from an expert who focuses on only that kind of cancer. Some basics one could look up include risk factors for a condition, whether inherited or not, some treatments, complications, prognosis, some ongoing research, etc.
#2: When to call, what symptoms may be worrisome: Some symptoms like blood in stool, crushing left-sided chest pain, persistent vomiting, weakness on one side of the body, etc, are universally concerning. However, there are also symptoms that are particularly alarming for each individual, based on their medical history. For example, if you have had a prior heart attack, even a slight chest pain can be worrisome. If you have had a mastectomy for breast cancer, then a new lump on your chest wall cannot be ignored. Endeavor to discuss with your doctor and find out what symptoms are particularly worrisome in your situation.
#3: Names of medications and what each is for: For each chronic condition, there may be a number of medications used to slow the course, treat symptoms, improve quality of life, and prevent complications. For example, a woman undergoing chemotherapy for breast cancer, may have pain medications to use if having body pains from the treatment, as well as other medications to prevent nausea. Knowing that ondansetron is for nausea means that a woman who has had lot of nausea, cannot afford to run out of ondansetron. A diabetic may run out of lipitor (used to control cholesterol to prevent stroke and heart attack) for a day or even a week, but cannot afford to run out of insulin for even a day (since serious complications can arise with high blood sugars).
#4: Any important lifestyle habits to avoid, or adopt: By changing lifestyle habits, some conditions can be better controlled. For example, a diabetic should work on dieting and exercise for weight loss and should cut down alcohol. A breast cancer survivor should stop postmenopausal hormone replacement therapy. Someone with hemochromatosis (a condition that causes build up of iron in the body) should avoid eating raw shellfish.
Do you have a chronic illness? In what areas have you felt you could do better in knowing about your condition. Feel free to leave a comment below. Watch this blog for my chronic disease information template that is coming up very soon.