We have regularly written about the value of health care knowledge. For example, see: Insights on Health Literacy. Health Rankings in America . Cancer Health.
Today, let’s look at the observations of a Crohn’s disease survivor. As Tessa Miller writes for the NY Times:
“Finding out you have a chronic illness — one that will, by definition, never go away — changes things, both for you and those you love. When I was diagnosed, I didn’t know how much my life would change. There’s no conversation about that foggy space between the common cold and terminal cancer, where illness won’t go away but won’t kill you, so none of us know what ‘chronic illness’ means until we’re thrown into being sick forever.”
“Chronic illness patients not only face painful physical symptoms, but also mental ones that linger even when the disease is well controlled. A therapist should be considered a crucial part of your care team, just as important as a gastroenterologist or cardiologist.”
“Your relationship with yourself changes. You grieve a version of yourself that doesn’t exist anymore, and a future version that looks different than you’d planned. You might have to give up career goals, hobbies and family plans, learning a ‘new normal’ in their place.”
“Chronically ill people research their diseases ad nauseam. They try more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure. So unless someone asks for your advice, don’t offer it.”
“There’s a sense of shame that comes with chronic illness that pressures patients into secrecy, making them feel like they can’t discuss their disease outside of the doctor’s office. Secrecy bolsters the lack of public conversation and knowledge, which feeds the shame patients feel.”
“Living with chronic illness makes every day a little harder, but it also makes every day a little sweeter. Though I don’t know what my future holds, I’m overwhelmed with a gratitude I didn’t have before my diagnosis — some days I marvel at just being alive.”
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