Receiving the diagnosis of a long-term health issue changes everything in an instant. After the initial shock of hearing the news comes a new reality: learning to cope and live with an acute condition that may or may not have a cure. The treatment and therapy demands on your time can become frustrating and exhausting. Additional stressors may change how you see yourself, interact with others and live your daily life. Coming to terms with the new direction your life has taken can feel overwhelming, but there are steps you can take to care for your physical health and emotional well-being during this time, beginning with learning all you can about what you’re about to face.
What is a chronic illness?
Chronic illness is defined as a condition that lasts for a year or longer. Finding the information to make decisions for your needs can be challenging yet empowering when selecting your long-term treatment team. By investigating and learning more about your illness, you’ll gain the knowledge needed to make choices that are best for you. This is a critical step in managing your care and controlling a situation that may feel chaotic.
Some diagnoses are long-term, whereas others can be mitigated and reversed. Alzheimer’s disease and dementia, arthritis and multiple sclerosis are examples of illnesses with no known cure. Some that can see vast improvement or reversal include type 2 diabetes, high blood pressure, coronary heart disease and some cancers caught in very early stages.
Why can it be difficult to cope?
When the common cold or a stomach bug invades, you feel crummy, yet those illnesses are short-term. You’ll bounce back and feel better soon. Taking a day or two off and lying low at home provides a respite: time to recharge and get well. A long-term diagnosis, on the other hand, can cause a complete disruption in your routine. With no end date in sight, feelings of hopelessness and depression can creep in. That’s why seeking strategies to enhance your well-being can help you better cope mentally and physically with your diagnosis.
More than ever before, this is the moment to strive for self-compassion. There is no room for shame or guilt. It is time to focus on you. You may not have the energy to accomplish everything you’re used to in a day. It’s okay to move “to-dos” off your list and postpone them until you’re feeling better. This may also be a point when it’s time to delegate and ask for help.
How do I share the news?
Telling others about your illness can feel daunting. The worry of being embarrassed or judged may creep into your thoughts. You may need some time to come to terms with the information before telling others, and that’s okay. This is your diagnosis, your life and your illness. Keep in mind that the buildup of fear you feel at telling others does not always reflect the reality of their reaction. Try not to allow the anxiety concerning how people will receive the news to overshadow that this moment is about you.
People react in different ways. Friends and family may be fearful, surprised or even in denial and plead with you to seek third and fourth opinions. Some become nervous, not knowing how to respond, or worried they might say the wrong thing. Try to have grace for others as you share the news. From the beginning of your conversation, indicate that there is no right or wrong way to react or feel. Some may provide immediate counsel or want to help. Perhaps they or a loved one have been down this diagnosis road before. If you are not ready for advice or opinions, set boundaries by saying, “I know you have been through this and, when I’m ready, I would love to come to you for guidance. Thank you for understanding and always being willing to listen.”
Whom can I count on?
Those who assist you do not have to be a nurse or superhero. The people you include in your circle of trust only need to be willing to lend a compassionate hand. You and your loved ones may have never anticipated this situation occurring. That’s why with the right help and support in place, you can maintain a level of independence while leaning on the compassion of others.
Living with a challenging condition shifts life for the individual and those who care about them. Independent activities, like getting dressed, using the bathroom, driving a car and even cooking up a storm in the kitchen, can all come to a screeching halt. Having a care team is critical. Consider enlisting family, friends, neighbors, support groups, those in your faith circle or healthcare providers to lend a hand.
If you will need a different level of supportive care or are concerned about your circle’s caregiver fatigue and burnout, reach out to your insurance provider concerning the type of in-home-care support your coverage provides. Social workers affiliated with your hospital system are a wealth of knowledge. They can lead you to resources and health agencies ready to help.
Where do I go from here?
Taking action early––digesting the news, enlisting help, building a calendar of appointments––will help manage your stress levels and help you deal with the road ahead. It also puts you in a better frame of mind to maintain a positive emotional, physical and spiritual attitude.
Physicians encourage keeping these things in mind to help regulate your mood and make you feel better:
- Add movement into your day when possible
- Eat a healthy diet within the guidelines of your treatment
- Steer clear of negative coping strategies, like alcohol and substance abuse
- Adopt zen-like stress relievers, such as prayers
- Release yourself from the obligations that consume time you do not want to give and energy you need to conserve
- Seek individual or group counseling when you need support to deal with your illness
- Arrange check-in times and medical updates with friends and family
- Be honest with everyone in your circle of care: ask when you need help, and be kind yet firm when you do not
There are a wealth of services available if you or someone you love is journeying through chronic illness. Moments of feeling sad and overwhelmed will happen, and that’s okay. Continue to do the things that bring you joy, whether that means visiting over coffee with a friend, taking a moment in nature to listen to the sounds around you or asking those close to you to cover you in prayer. Right now, it might be the little things that benefit your mind, body and spirit, and they are worth grasping onto.
Sources: Cleveland Clinic, Medline Plus and Harvard Health
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