Every 12 weeks I get an infusion of Remicade, a drug delivered intravenously to help reverse the symptoms of Crohn’s Disease, ulcerative colitis and rheumatoid arthritis. I usually go to an infusion facility at either a hospital or cancer treatment center, but this time I went to a small office specifically for the patients of my new gastroenterologist. It’s an intimate setting (only 2 chairs instead of 4 or more) and anyone sitting in one of the 2 chairs is dealing with just one of two illnesses, ulcerative colitis or Crohn’s Disease.
Sitting in the other chair was Dave (name changed), a young man about to start college. He was there with his grandmother. I don’t usually talk to people during the 2-plus hours it takes them to administer the drug. However, our close proximity, and the knowledge that we were dealing with a similar diagnosis, inspired me to ask Dave if it would be okay to ask him a couple of questions. I was curious about his experience.
I asked Dave which illness he was dealing with, when he was diagnosed and how he was doing. (He was diagnosed with ulcerative colitis when he was 14 years old and is doing okay.) It is common for parents to speak for children when they are younger but I was taken aback when, as we continued to talk, Dave’s grandmother started answering the questions instead of Dave.
As his grandmother continued talking, I realized that Dave’s illness had been embraced as a family affair. She told me that everyone in his immediate family was changing their diet so Dave wouldn’t have to walk this path by himself. (The book, The Maker’s Diet, was in her lap.) While I appreciate her motivations and understand that their dietary changes would make meal preparation easier – and were probably healthy for everyone – I wondered if this level of involvement was potentially burdensome to Dave.
Yes, Dave’s illness is impacting the family but the illness, itself, is not. Yes, he was 14 years old when he first became ill, but it’s now 4 years later and he appears to be intelligent, well-adjusted and ready to move forward in his life.
I am a parent. I know how hard it is to let go and trust that your child will be able to weather life’s challenges, even when you know it’s time. I’m also a daughter. I know how important it is to be trusted to meet the challenges in my life. Yes, we need physical and emotional support when we are ill, but we need it less as we get older – and better. Ultimately, illness recovery is a solo journey. It has to be.
What’s a parent – and any other well-meaning relative – to do?
- Read all you want about our illness, but be conservative in sharing your opinions
- Ask if your support is needed, and if the answer is yes, ask how and in what form
- Share your thoughts and concerns, and then ask what we think or feel
What is your experience?
- Is illness a family affair or a solo journey?
- When is your family’s support helpful?
- When does it become a burden, and why?