Last week a concerned father called me about his son, a college freshman, now dealing with Crohn’s disease, an illness that commonly presents in 20 and 30 year olds. Crohn’s disease affects the intestine, causing abdominal pain and weight loss. Because the son was striving to act “normal,” despite poor health, the father wasn’t optimistic that his son would follow through and call me.
Here is an open letter to “Zach” (not his real name), and to all the “Zach”s and “Emmas”s out there.
Your father called me last week and let me know that this year, your first year in college, you were diagnosed with Crohn’s disease, after being hospitalized in February. I can imagine how excruciating the abdominal pain and other “unmentionable” symptoms have been. All this, and you have had to juggle classes, talk to teachers, friends and relatives, explaining yourself to so many people. You have had to weather a great deal in a short amount of time. It’s not fair, and I’m so sorry.
I’m guessing that you’ve been given tons of unsolicited advice from people who mean well, who want to see you back to being disease-free and cured, but who have very little understanding of Crohn’s disease. You are also under the care of a doctor, no doubt a gastroenterologist, who has given you medication to control this disease. Perhaps you are grateful for the medicine (I hope so), or perhaps you are angry that you need it. It’s possible that you are experiencing both feelings at the same time. In my experience, personally and professionally, this is normal when dealing with chronic medical conditions. (I could have written “illness” here, but it’s a loaded term for many people, not neutral at all, and full of stigma.)
In the back of your mind, or perhaps front and center, you are probably waiting for a cure. You trust your doctor because so far he/she has done the most to help you feel better. You believe, or fervently hope, that eventually you will be cured. How can you not expect this, in these days of such wonderful medical technological advances? You’d be able to return to growing up in the normal way, free from disease and being different, back to the job of focusing on your studies, creating the life you had imagined would be difficult enough—- the exciting and demanding life of a typical college student. You want to go back to being just like everyone else and simply forget about this episode in your life. You want to be able to depend on your body again, without even thinking about it.
I understand all of this. I was already a young doctor when I was diagnosed with Crohn’s disease. In my heart I expected my doctors to cure me, though intellectually I knew it wasn’t possible., I experienced profound sadness and felt let down by my doctors and by my body. I suffered.
It took many years, but I have learned that you actually can have an impact on this disease. You can improve and have a “life,” without it necessarily being the life you thought you would have. It can even be a better life.
I recently attended a lecture given by a prominent gastroenterologist. He revealed that a multitude of individual genetic defects have been found to be associated with Crohn’s disease so far. It’s also true that just because someone carries one of those genes, it doesn’t necessarily follow that the gene is fully expressed in the form of uncontrolled illness. Many people carry genes for all kinds of diseases, yet they remain healthy. Why is this?
Well, the other variable in disease expression, aside from our genes, is our environment. In my mind, “environment” is not just our external surroundings. It’s what we put into our bodies through all of our senses—what we see, what we think, what we eat, what we hear, what movies we watch, the people we interact with and how they make us feel, the classes we take in school, the pressures we put on ourselves—-all of this constitutes our environment.
Take two plants of the same variety, looking more or less the same. They will need good soil, sunshine and water. If they are given too much or too little of what they need, they will grow differently from each other. One might look sickly with spotted leaves; the other green and lush. The environment has an impact, and we are living beings, just like plants.
Depending on its genetic make-up, each plant has its own requirements. People also have different requirements to thrive. This is the part I can help you discover. I believe it’s possible have an impact on the course of many diseases by adjusting the “environment,” both external and internal. The adjustment takes time, commitment and good follow through.
People talk about the difference between healing and curing. Curing is about getting rid of the disease completely and recovering the body that you once had. Curing is wonderful when it’s possible.
Healing is about so many other things. Healing is rich with possibility. It’s about acknowledging and working with the wound, in your case the Crohn’s disease, and learning and moving through the world to find your rightful place in it. It’s really about using the experience to grow in many ways—in mind, spirit and body. The body may always have a tendency to show a particular disease when stressed, but improvement is very possible when you adjust your “environment.”
Many people will tell you that their way to healing is best. You will have to balance both patience and curiosity as you navigate what people offer you. I believe there are many ways to heal, and your way will be as unique as your own fingerprint. You will need to discover this for yourself. At least, I hope you’ll give it a try.
I’m here, Zach, to help you in this process. I’d love help you regain your footing and discover your place in this world, so I hope you’ll call me. You have so much to offer.
What a wonderful letter. I appreciate your distinction between healing and curing, a distinction that allows us to face our current realities (healing) and still maintain hope for a cure. Also, I think your analogy of two plants, one thriving, one stunted by its environment, is the simplest/best example I’ve seen. Not sure why I’ve never heard this before—thank you!
This beautiful and poignant letter has many excellent teaching points for me as a pediatrician and neonatologist to help children of all ages and their families when they are first confronted with a life altering diagnosis and then living with the chronic medical condition. Thanks so much!
This is excellent, and meshes with my experience after 8 years with severe Sjogren’s. I forwarded the letter to my sister’s nephew.. who also just developed Crohn’s during his first year of college.
Thank you! Sarah Schafer
Thank you, Sarah! I hope the letter will be helpful.
There are lessons in your letter for the daily lives of us all. Thank you for the delicacy and wisdom.
I love this letter. How well you describe the feeling of gratefulness for the medication that seems to be helping, along with anger for needing it. How well you also know what these symptoms are truly like.
I especially appreciate the reminders that all of us can help ourselves thrive, if willing. May Zach, Emma, and everyone else hear your message — and be willing to discover their own healing environments too.
Keep on writing,
Thank you for sharing your words of experience, reality, wisdom, compassion and permission. Your words are accessible to anyone going through a rough time, caught in denial, fear and or self blame. Your beautiful words help us to pause and understand how we can simultaneously hope, mourn and be effective in our own lives all at the same time.
Thanks for being a blessing in my life,
S. Packer-Rosenthal, MSW, LMFT, PPSC
Thanks for sending this Abby. I forwarded it to my brother who has had Crohn’s for 30 years, since he was a teenager. I hope he’ll check out your blog and website.
Shabbat Shalom and all the best,