When you live with Crohn’s disease, your digestive system becomes the center of your world. Every plan is subject to the dictatorial nature of your body’s chronic condition.
When Crohn’s is active and you’re experiencing flare-ups, your independence may be compromised, possibly limiting your mobility and creating a variety of issues with family, friends, and co-workers.
Five Stages of Grief
It’s not uncommon for people diagnosed with a chronic condition to experience a period of grief, as the condition will have a profound impact on the rest of their lives. Elizabeth Kubler-Ross, a renowned psychiatrist, proposed five stages of grief as a model for the process of adjusting to death, which can also apply to emotional trauma, such as a Crohn’s diagnosis.
The five stages of grief include:
- Denial: Unless Crohn’s runs in your family, your Crohn’s diagnosis may come as a surprise, which may lead you to reject it—especially if you’ve been leading a healthy, active life. Adolescents may experience denial because the disease will force them revert back to earlier, childhood levels of dependency on their parents, just as they’re starting to mature.
- Anger: Understandably, having to restrict your way of life to accommodate a new reality based on chronic illness can elicit powerful negative feelings. You may be angry with yourself, your loved ones, and others who don’t have Crohn’s. Because you can’t reverse your symptoms or cure your disease, you may feel anger towards the diagnosis itself.
- Bargaining: Making the transition from your old way of life to living with Crohn’s is a challenging process, and you may be tempted to make compromises that won’t serve your new health requirements—such as continuing to eat foods that cause flare-ups. You may think you can redress the balance in other ways, but it’s unlikely.
- Depression: There are many facets of Crohn’s disease that can cause complications—inability to control your bowels, frequent absences from work, depending on others, and more. These, along with unexpected flare-ups, can make you uncertain about your future and lead to isolation and even a loss of confidence, which can lead to depression.
- Acceptance: Arriving at this last stage is necessary for anyone adjusting to living with Crohn’s, as it signals the detachment from negative emotions. You’ve learned that you don’t have to let Crohn’s define you.
Navigating Your Emotions
There is no causal relationship between emotions and Crohn’s disease; however, sufferers who have negative emotional reactions to a diagnosis may take longer to find effective treatment.
Adolescents are at a particular risk for encountering difficulty in adapting to a chronic condition. Due to their inexperience in dealing with the ups and downs of everyday life, they haven’t yet developed good coping skills.
Coping mechanisms differ from person to person. An optimistic attitude—knowing that many effective treatments are available—is helpful. Some patients respond to Crohn’s symptoms with acceptance, while others become upset to the point of worsening their flare-ups due to stress.
Crohn’s patients who see themselves as a burden on their family may irrationally blame themselves for somehow attracting the disease. Crohn’s patients can thrive if they accept their condition and find practical ways to adjust to their reality and take their symptoms in stride. Here are some ways to take charge:
Prepare for Eventualities
Always carry a survival kit with your prescription medications, over-the-counter antidiarrheal medication, toilet paper, moist wipes, an extra pair of underwear, and a change of clothes. Do some research if you’ll be away from your home or your workplace to map the location of public restrooms beforehand.
Enlist family members and trusted friends to provide assistance and offer reality checks as needed. Maintain regular contact with your doctor, and consider talking to a therapist. Psychotherapy could help your perspective and avoid unwarranted guilt trips. Help is also available online from the Crohn’s & Colitis Community, which offers forums, access to members’ personal stories, a panel of experts, downloadable tools that track medical treatments and daily food intake, plus a wealth of other useful resources, including chapters you can join: www.ccfacommunity.org.
Read everything you can about Crohn’s. The better you’re able to grasp how the disease affects your body and mind, the better equipped you’ll be to handle it. Take notice of which foods trigger flare-ups, and which actions soothe them. This can reassure you about how much control you have over your condition.
Exercise is a powerful tool against any condition, so don’t skimp on it, as you’re exercising to improve your Crohn’s symptoms. If you’re feeling down about your disease, exercise is also one of the easiest ways to elevate your mood.
Even if the course of your disease is running smoothly, don’t shy away from learning about what measures to take if and when it worsens, such as surgery. Knowing what you may have to face down the line can dispel fearful thinking and help you feel in control of your ongoing symptoms and your reactions to them. If emotions continue to overwhelm you, consult with your doctor about other measures, such as anti-anxiety or anti-depressant medications.