Living With A Chronic Medical Illness
This blog post is part of a series entitled Real Lives, Real Stories: Personal Experiences With Mental Illness.
Note: The following person’s account of his/her personal experience has been published with his/her consent to support the mission of The Clay Center for Young Healthy Minds, and let others in similar situations not feel so alone.
Intro music written and performed by Dr. Gene Beresin.
Outro music arranged and performed by Dr. Gene Beresin.
Gene Beresin, M.D.
Grace Herman developed Crohn’s disease when she was 16 years old. This is no small problem for a teenager. After all, how does one expect to cope with the physical pain, let alone with the sense that your body is failing you—and all while you attempt to lead a “normal” life in the face of uncertainty?
All teenagers are self-conscious, particularly about their appearance, body image, performance, and future; a chronic disease diagnosis can serve to compound those insecurities further.
And, how do parents cope with their child’s illness? What treatment is best? Will it work? How will it affect her happiness and success in life? And, how will I cope with knowing my child is sick? How will it impair my own ability to stay on top of things? What is my role, particularly as my child needs to become more independent and take control of her life?
This story is not necessarily unfamiliar to many of us. In Grace’s case, it’s further complicated by the fact that her dad is a physician, and her mom a nurse. One might assume that knowing about health is an asset, but sometimes, knowing too much really can become a burden.
Here we see Grace’s personal advice for young people and parents coping with a chronic disease.
Living With A Chronic Medical Illness:
Tips For Youth And Parents
Grace Eujeania Herman
1. Don’t go on “The Google”.
There is no greater jeopardy to your peace of mind than the search function on Google. This cautionary warning was the first thing told to me by my doctors, 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 without first conferring with my care team. 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. As one of my amazing and irreplaceable physicians Dr. Annah Abrams often repeats to me, “Look for horses before zebras.”
2. 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 fear. Know that it is within your child’s right, and your right, to take your time in deciding who is the best fit. This may not necessarily be the first doctor you see, or even the doctor who diagnoses your child. Try to find someone with whom your child (and you) can safely talk to—and with whom you WANT to talk to. Early on, the conversations about your child’s medical condition can be awkward and uncomfortable; however, the right doctor will know how to approach them, and will therein begin to build a dialogue based on trust and empathy.
Even after you have found your child’s doctor, know that the first few years following a diagnosis can be the most difficult; after all, you, your child, and her doctor or care team 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.
3. 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 (IEP) with the help of my guidance counselor. I was embarrassed, as I deemed such plans 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, at which point I contracted shingles and had to miss two exams. (This bout with 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.)
Following that unnecessarily stressful experience, I connected with my school’s Office for Students with Disabilities (OSD). While I almost never had to use the resources they provided, the peace of mind I garnered from working with them went a long way: I didn’t have to get to know someone in the midst of a medical emergency. In the few instances that I had to postpone a test due to illness, or take an exam with extended time, the ease of notifying my OSD advisor was a far more manageable endeavor, and never compounded the stress my body was already under. Lesson learned.
Encourage your child to put “accommodations systems” in place while he is healthy and able, and assure him that doing so is not a negative indication of his intelligence or ability. The worst time to seek help is when you feel your worst. He may never end up using them, but the one time he does, these resources will prove invaluable. Start with a guidance counselor or college advisor, and go from there.
4. Talk to others in the same boat.
A few months ago, I met a physician who also has Crohn’s disease. She was describing a symptom she had been experiencing, and while sympathetic, I was also excited—it was a symptom that I, too, had experienced, and for which my doctors had not been able to offer an explanation. This was not, of course, their fault; an illness and its manifestations can vary from patient to patient. For someone with a chronic disease, it goes something like this:
I feel something weird. My doctors can’t offer an explanation. My doctors are experts, and if they don’t know what it is, it must not exist. I’m experiencing something that doesn’t exist, so I’m either imagining it, or my doctors think I’m making it up. So, either way, I must be crazy.
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, I realized that I had never shared my experience with someone else who had the same medical condition as me. I had been made aware of 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. I would advise you as parents to (gently) encourage your child to talk to someone else who is going through what she is. 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 to your child. You may well be surprised by your discovery. If that doesn’t work, email me! My recent experience with this physician has been an important lesson in seeking support from those who can offer it best—and, who better than someone with the same illness?
5. Find healthy ways to cope.
Being diagnosed with a chronic disease is not a death sentence, but in some ways, it 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 others as noted above is great. You may also want to talk with a counselor or therapist, or engage in another means of stress-relief, such as yoga, meditation, sports, or other activities that are possible given your particular condition. 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 weigh on 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.” And, try not to feel sorry for yourself.
6. Do not try to cure your kid.
Like all 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 20 years from now, there will be a cure.” This, for me, is the third rail. A cure twenty 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.
It can be a tough trying to find the right ingredients to create a healthy life for your child. However, one of the best ways to help make his life easier is to help him find the ingredients that will build resiliency in his life, now, as it is—instead of clinging to some hope that the future could 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.
Following up on that last point, it’s also important to not feel guilty. We all have our challenges, and you did not bring this on—nor did he! 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.” This is why resilience is so important.
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. I hope the very same for your children.
I often say that it’s easier being the patient than the parent. It’s far easier to experience pain than to watch your loved ones suffer from it. 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.
Gene Beresin, M.D.
One thing is clear: Grace Herman is wise beyond her years. And, I think most inspirational to me, is that she sees her illness as a vehicle for adaptation and growth. Far too many of us see the glass half empty.
Not Grace. Perhaps her name embodies the acceptance of her illness—she accepts it with grace.
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