Think of all the times you’ve been to the doctor, in the hospital, had surgery, or needed a prescription medicine. Even if that totals to a significant amount of time, it’s still only a fraction of your medical care. The rest is self-care: everything you do to take care of yourself.
While physicians, nurses, and other providers are important to your care, the most important provider is you. ‘You are already your own doctor’, to quote the late Tom Ferguson, MD – an advocate for empowered patients. The iceberg graphic is from an essay on patient autonomy by Hugo Campos of the Society For Participatory Medicine. Above the iceberg it says: “Our interactions with the healthcare system are only the tip of the iceberg.” Next to the iceberg, it says, “Self-care is and has always been our predominant form of health care.”
Unfortunately, most medical studies focus on just the top of the iceberg — the things doctors can do for us, especially new drugs and surgeries. The self-care that makes up most of the iceberg is usually ignored, and so we don’t really know that much about how patients take care of themselves. But self-care can and should be studied — just like doctor-care pill-care are studied.
Which is why it’s awesome that a study* published this month in Gastroenterology Nursing looks at self-care in patients with inflammatory bowel disease. The study team, led by Ulrica Lovén Wickman, MScN, RN, interviewed twenty patients with IBD to learn about their self-care practices. While this is a small study for medicine, it is a giant leap for patients — insofar as it validates the importance of our self-care.
And what’s interesting about the study is that it defines self-care broadly. What we think of as normal self-care — ‘handling symptoms’ — is just one of four categories the authors looked at; the other three were ‘symptom recognition’, ‘planning life’, and ‘seeking new options’. Looking at the categories, the study helps us appreciate just how much self-care is involved in managing IBD.
Patients in the study reported symptom recognition both in terms of physiological and psychological sensations. Physiological symptoms included diarrhea, heartburn, cramping, and tiredness, among others. Psychological sensations included stress from having IBD, but also “loneliness, aggressiveness, and symptoms of depression”. Symptom recognition involves figuring out what is and isn’t the disease — sometimes a difficult task.
Handling of Symptoms
Patients in the study handled their symptoms in different ways — ‘using medical treatment’, being the most obvious. ‘Adapting the diet’ was an important way for many patients to deal with symptoms, and included portion control, avoiding trigger foods, and reducing junk food. (Crohnology members report diet is important, too.) ‘Stress management’ and ‘using CAM’ were other ways patients handled symptoms; CAM is Complementary and Alternative Medicine, including everything from meditation to herbs to hot pads.
Of all the categories of self-care, planning life is the one that only patients can do. Patients in the study planned around their disease by deciding which activities to participate in, and which activities to refrain from. Patients reported factors like toilet availability, energy level, and food affected their planning.
Seeking New Options
The study broke this category into two subs: ‘seeking information’ and ‘personal contacts’. For information, patients reported reading, lectures, and online sources. For personal contacts, the study mostly focused on patient relationships with their provider. Just as an aside, that’s too bad: patients can learn a lot from each other. One of our goals at Crohnology is to be a network of personal contacts and support, as well as a source of information.
The study concludes:
A decision to actively participate in the care of a chronic illness is a prerequisite for self-care. Healthcare professionals must consider patients’ potential for and desire for self-care when giving advice on self-care activities. Doing so may be effective in a healthier life.
That could be a little stronger: doing so will definitely be effective in a healthier life. As always, more research is needed, but this is an important first step in exploring the self-care that is crucial to IBD patient’s health and well-being.
*Loven Wickman, U. et al. “Self-Care Among Patients With Inflammatory Bowel Disease; an interview study”. Gastroenterology Nursing July 2015 (online only; available free[PDF]