Narrating Medicine: What I Want You To Know About My Crohn’s Disease

Grace Herman (Courtesy)

Grace Herman (Courtesy)

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.

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.

Furthermore, the service helped me communicate the realities of my illness to my professors in an official capacity, so that I never felt guilty when illness struck.

Talk To Others Who Get It And Make Connections

A few months ago, I met a physician who also has Crohn’s Disease. She was describing a symptom she had been experiencing, and I suddenly got excited — it was a symptom that I’d experienced too. And it was something my own doctors couldn’t figure out. This can happen with my condition, as an illness and its manifestations can vary from patient to patient. When I approach my care team with a weird new symptom, such as dizziness or headaches that cannot initially be explained, I often feel guilty for wasting their time on something that I could just be making up. This may sound flippant, but it’s a very real worry, at least for me. Do I sound crazy? Am I making myself sick? Is this all in my head?

In talking to this doctor with Crohn’s, I realized that I had never shared my experience with someone else who had the same medical condition as me. I’d been told about support groups early on, but at 16 years old, sitting in a circle and talking about my GI problems was just about the last thing I wanted to do. But now, I would advise both parents and children to strongly consider this option. If a support group is too much, ask around to see if there are any friends or family members with the disease who would be willing to talk. You may be surprised.

Find Healthy Ways To Cope

Being diagnosed with a chronic disease is a life-changer. As a kid who is suffering, you need to come to terms with the fact that this is something you will live with for the rest of your life. There are many ways of coping. Talking with peers can be great. You may also want to talk with a counselor or therapist, or engage in other forms of stress relief, such as yoga, meditation, sports — whatever you can manage. In short, you should think of developing your own individual coping plan, much like the individual learning plan I had to put in place in college.

Having a chronic disease can deplete your self-esteem and self-image. So try to find your own strengths in life, feel good about them, and create your own “new normal.”

For Parents: Do Not Try To Cure Your Kid

Of course, as parents, you wish for your child a life free of suffering and hardship. It is thus understandable that you would want to give him every hope for that life — and what better way  than to instill hope for a cure?

In especially frustrating times, my parents would say, “But they’re going to find a cure. I bet two years from now, there will be a cure.” This, for me, is the third rail. A cure 20 years from now does not help me develop coping strategies for the present — the “cure-free” reality that is my life with Crohn’s Disease.

One of the best ways to help make this life easier is to help kids find the ingredients that will build resiliency now, rather than clinging to some hope that the future might be better.

And you as a parent need an individual coping plan, too. Perhaps you could benefit from participating in a parent support group, or speaking to a counselor who has experience with kids who have chronic diseases. In other words, try to find a way to move on with your life, and not obsess over your child’s illness. This is really hard, I know. Though I am not a parent, I know how tough it has been on mine.

Also, do not feel guilty. You did not bring this on — nor did your child. No one is to blame in these situations, even if some diseases “run” in families. It’s much like what one of my doctors said: “Everyone has something, and we all just deal with the hand we’re dealt.”

I love my life, and not despite of, but because of Crohn’s Disease. I graduated from a fantastic university, I have the job of my dreams, and I’m planning to apply to medical school this spring. Last month, I ran my first half-marathon. Being diagnosed at age 16 with a chronic illness taught me lessons in discipline, patience and resiliency that many of my friends have yet to learn at the age of 24. A cure for my disease would be a blessing, but I know that it’s is not something I need to live a fulfilled life.

Listen Closely

The best thing you can do as a parent of a child with a chronic disease is to listen to her. You may not have all of the answers (in fact, you probably won’t), but I have found that in my lowest moments, the greatest medicine was sometimes the comfort of having my mom and dad beside me.

An earlier version of this story ran on The Clay Center for Young Healthy Minds website.

Please follow our community rules when engaging in comment discussion on this site.