Learn about Crohn’s disease through the voice of a person with this disease.
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.
Hope For The Best, Plan For The Worst
When I was diagnosed in my junior year of high school, I was quick to decline my doctors’ suggestion to create an individual education plan with the help of my guidance counselor. I was embarrassed, because I saw such plans as only for kids with either learning disabilities or disciplinary problems — neither of which I had. I stuck to my guns on this all the way into my second year of college, when I contracted shingles and had to miss two exams. (The case of shingles was due to medications that were suppressing my immune system. So, not only did I have to deal with my disease, but also with undesirable effects resulting from its treatment.)
After that, I connected with my school’s Office for Students with Disabilities (OSD). While I rarely relied on them, I knew they were there: I didn’t have to get to know someone in the midst of a medical emergency. When I did have to postpone a test due to illness, or take an exam with extended time, it was easy to notify my OSD adviser.