The Challenges of Living with a Chronic Illness

Living with a chronic illness, whether it’s constant or sporadic, can drastically impact our quality of life. Some days the psychological effects can be worse than the symptoms. From financial difficulties to the stress, anger, depression, or anxiety onset by the side effects of being sick, it may feel like a struggle to find and maintain a positive quality of life. Especially when a diagnosis doesn’t appear to have a silver lining.

You are not alone. Dealing with a chronic illness or difficult diagnosis is not an easy hurdle, but there are ways to achieve better days and better moments. Below you’ll find several resources that can help you face a chronic illness or difficult diagnosis.

There are moments when life gets heavy. If you or a loved one is struggling with suicidal thoughts or ideations, don’t be afraid to reach out for help. There are multiple resources offered through various platforms and forms of communication:

National Suicide Prevention Lifeline: 1-800-273-8255
This toll-free hotline is available 24/7 and will route you to the nearest crisis center. Once connected, these centers will provide you with crisis counseling and health referrals.

National Hopeline Network: 1-800-784-2433
Known best as the National Hopeline Network, this call line is now under the IM Alive umbrella, but still provides the same free crisis intervention service. If you are experiencing thoughts of suicide, you can call this number to speak with someone directly.

IM Alive: www.IMAlive.org
The first of its kind, IMAlive.org is a free chat-based crisis response service that allows you to speak with a volunteer trained and certified in crisis intervention.

Crisis Text Line: Text “TWLOHA” to 741-741
This service allows you to chat via text with a trained crisis counselor.

Learning to cope with a chronic illness is an ongoing process. One that can feel like a rollercoaster ride of symptoms and emotions. Yet research has shown that patients who acknowledge and face their diagnosis adjust better than those who choose to resign themselves to it or ignore it. Building a social support system and actively using coping strategies are essential after receiving your diagnosis.

You may not be able to eliminate a chronic illness, but you can find a sense of control in understanding it. Start by generating a list of questions that you can ask your physician so you better understand your diagnosis and what to expect.

Coping includes:

  • Minimizing Stress
  • Creating a Dependable Support Network
  • Establishing Realistic Goals for Yourself
  • Seeking Counseling to Help Come to Terms with Your Diagnosis
Caregivers offer a unique and invaluable role in the life of an individual with a chronic or terminal illness. Tasked with making day-to-day life easier for patients or loved ones struggling with increasing needs brought on by their illness, they are an essential part of the support system.

However, dealing with a chronic or terminal illness is no small task. People who act in caregiver roles can become stressed and experience mental and physical exhaustion. This overwhelming feeling of exhaustion related to helping others can be a sign of compassion fatigue. It is important that both the caregiver and the individual being cared for takes the necessary steps to maintain physical, emotional, and mental support. Sometimes that requires knowing when to seek assistance, including care coordination, assistance, support groups, or counseling.

Important steps include:

  • An assessment determining a care plan with support services
  • Respite to reduce caregiver burdens
  • Financial support
  • Caregiver education and support programs
Care coordination is an essential step in caring for an individual with a chronic or terminal illness. It connects all the individuals responsible for a patient’s care through organized patient activities and keeping the individual’s support system informed through shared information about his or her condition.

This includes regular assessments of the patient’s needs, mapping out care management and medication management, establishing accountability and transitions of care, and creating a plan that is proactive, not reactive, to the progression of the patient’s illness.

Care coordination and resources are typically implemented through your primary physician.