Grace Herman, of Newton, was diagnosed with Crohn’s Disease at the age of 16. At first, she focused the majority of her efforts on learning to anticipate and cope with the various struggles of living with a chronic disease: the nausea and pain throughout her body, and overwhelming fatigue. Now 24, Grace focuses much of her time on maintaining an overall healthy lifestyle — she has found exercise to be a fantastic way to maintain her health, reduce her stress, and stay attuned to warning signs of illness. A 2014 graduate of McGill University, Grace is now a clinical research coordinator for the Substance Use Disorder Initiative at Massachusetts General Hospital.
Listen above to Herman and her father, John, talk with Massachusetts General Hospital psychiatrists Eugene Beresin and Steve Schlozman about living with a chronic illness.
Here, Grace offers some tips to parents and children on dealing with a chronic illness:
Don’t ‘Google It’
There is no greater jeopardy to your peace of mind than the search function on Google. This was the first thing my doctors told me and I must emphatically endorse their advice. Almost a decade has passed since my diagnosis, and still, the arrival of an unfamiliar pain or symptom tempts me to search for an answer from the most accessible, but not necessarily the most reliable, source. Often, I’ll search instead of picking up the phone to call one of my care providers. And all too often this delay in reaching out has rendered me physically sick. Left to my own devices, I have also been plagued with crushing anxiety about everything I might have. Often, it’s not the case: As one of my amazing physicians, Dr. Annah Abrams, often says, “Look for horses before zebras.”
Choose The Right Doctor
A huge part of finding security in living with a chronic disease is having the right person to assuage your inevitable fears. Parents and children should know that you have the right to take your time and decide who is the best fit. This may not necessarily be the first doctor you see, or even the doctor who makes the initial diagnosis. Try to find someone with whom your child (and you) feel safe — someone you want to talk to. At first, conversations about your medical condition may be awkward and uncomfortable; however, the right doctor will know how to handle this and begin to build a dialogue based on trust and empathy.
Even after you have found a doctor, know that the first few years following a diagnosis can be the most difficult; after all, you are trying to determine (sometimes through trial and error) which treatments are the most effective. Bolster yourselves through this time of uncertainty with the knowledge that you have the best people on your side working toward a common goal. Continue reading