People living with Crohn’s know all too well that this disease interferes with daily life. Characterized by symptoms like abdominal pain, diarrhea, and weight loss, this chronic inflammatory disease of the digestive tract can cause serious issues from day-to-day. Consuming and digesting food accounts for a significant portion of each day, and Crohn’s symptoms can quickly de-rail the most carefully laid plans. If you have a family member or friend living with Crohn’s, it may be hard to fully understand this impact.
Mary*, MPAS, PAC, has a unique perspective on Crohn’s disease. As a physician assistant, she helps her Crohn’s patients find personalized treatment solutions for improved outcomes. She lives with the disease herself, so she has an intimate understanding of just how challenging that task can be. From this perspective, she shared some valuable insights for family members and friends of those living with Crohn’s including 3 challenges a patient may be facing:
- Challenge #1: More than an upset stomach.
While Crohn’s disease is an inflammatory disease of the digestive tract, symptoms can manifest in other areas of the body. Fatigue or exhaustion are common symptoms many patients face “Your body is working in overdrive all of the time, and it’s exhausting”, Mary explains. “It makes everything harder – getting ready in the morning takes extra time. If I wake up with a new onset of a flare, even if I can get to work it’ll set me 30 minutes behind at least”.
- Challenge #2: Unpredictability.
“Nothing is predictable with any autoimmune disease, but especially Crohn’s”, says Mary. While many Crohn’s patients carefully plan their diets to avoid certain triggers, a flare can still happen at any given moment. Patients may feel a lack of control in their own lives due to the unpredictable nature of Crohn’s disease. This unpredictability also makes it hard for patients to keep scheduled appointments, which is something Mary struggles with herself. “I find myself cancelling plans last-minute a lot. If I’m having a bad day with symptoms, the last thing I want to do is go out to dinner or a movie. People don’t get that it’s not a choice, and that’s frustrating”.
- Challenge #3: Psychological burden.
Aside from physical challenges and logistical challenges, Crohn’s patients face psychosocial challenges. The symptoms of Crohn’s disease can be somewhat taboo, and as a result are embarrassing for patients. In addition to embarrassment, patients may feel guilty over cancelling plans, isolated when symptoms force them to stay home, or overwhelmed when fatigue magnifies simple everyday tasks. Furthermore, patients may feel anxiety about the disease’s unpredictability, and worry about the next flare even when symptoms are well-managed. “Everything got a lot harder once I was diagnosed with Crohn’s – not just from a physical standpoint, but from a psychosocial standpoint”, expresses Mary.
Keeping these challenges in mind, here are some do’s and don’ts for supporting your loved one with Crohn’s disease:
- DON’T bring your loved one to new or adventurous places without checking with him/her first.
- DO let your loved one pick a comfortable location for an outing. That way if symptoms occur, your loved one can easily find the restroom or navigate his/her way back home.
- DON’T take it personally when your family member or friend cancels plans at the last minute.
- DO understand that your loved one can’t help when symptoms occur and ask if there’s anything you can do to help.
- DON’T become frustrated if your loved one takes longer than usual to complete seemingly simple tasks.
- DO be aware that fatigue and exhaustion can make simple tasks overwhelming for your loved one.
- DON’T make assumptions when cooking for a family member or friend.
- DO verify the menu with your loved one ahead of time. If your loved one can’t tolerate the food you’re cooking, this will give him/her a chance to eat ahead of time or bring a separate dish.
- DON’T make dietary or medication suggestions to your family member/friend.
- DO remember that Crohn’s disease is highly individualized, and your loved one’s healthcare providers are working hard to optimize his/her treatment plan.
- DON’T mock or stigmatize symptoms of Crohn’s disease.
- DO let your loved one know that there’s nothing to be embarrassed about and his/her symptoms are natural.
By considering the challenges Crohn’s patients face and implementing these suggestions, you can help to ensure your loved one living with Crohn’s disease feels supported.
*Name and identifying details have been changed to protect the privacy of individuals.