Posted by Summer Katz, M.A., LMHC
A few of the common challenges in life with a chronic illness include access to or education about needed medication; participating in daily tasks or routines; complying with identified treatments; and utilizing available care networks. It is no secret that these challenges occur for not only the individual diagnosed with the condition(s), but certainly also for the family members or caregivers involved. Receiving a diagnosis of one or even multiple chronic medical conditions can become a barrier to healthy emotional coping. Many people struggle with adjustment to the various symptoms or limitations associated with illness.
Managing chronic illness is nothing new for older adults. In fact, AARP reports that over 70% of adults, aged 45 and older, have at least one chronic condition, and 20% are reported to have three or more. Most commonly older adults suffer from obesity, heart disease, depression, diabetes, cancer, and emphysema, though as you age, rates of conditions like Alzheimer’s and dementia rise as well.
When you are ill with an acute illness such as bronchitis or the flu, you recognize that you will feel better and back to normal within a short period of time. A chronic illness, on the other hand, is different. A chronic illness may never go away and can disrupt your life and your family members’ lives in a number of ways.
In addition to specific symptoms of the medical illness, people commonly complain of invisible symptoms such as pain, fatigue, and mood disorders. Physical changes from a disease may affect your appearance. These changes can turn a positive self-image into a poor one. When you don’t feel good about yourself, you may prefer to be alone and withdraw from friends and social activities. These symptoms are essentially components of depression, and choosing to engage in them can easily lead to an unhealthy coping habit. With that, the goal is to recognize that you are not alone in your response to the impacts of the chronic condition(s), and to know that depressive and anxious symptoms are certainly treatable.
Chronic illness can also influence your ability to work. Morning stiffness, decreased range of motion, changes in how your body operates, and other physical limitations may force you to change your work activities and environment. A decreased ability to work as well as the potential for added medical bills may also lead to financial problems. Stress can build and can shape your feelings about life. Prolonged stress can lead to frustration, anger, hopelessness, and, at times, depression.
Many chronic conditions are managed in part by a fixed medication schedule aimed at keeping symptoms at bay and even reversing recent damage. Unfortunately, prescriptions and supplements for a chronic disease can be numerous and complex.
The Mayo Clinic reports that upwards of 50% of patients with chronic disease don’t actually take their medicine as prescribed, leading to countless hospitalizations and alarming mortality rates. It is no surprise that many suffering from chronic illness are unable to adhere to their prescribed treatment plans for a number of reasons such as confusion, complicated medicine schedules, cost, health illiteracy, lack of caregiver support, and communication barriers between doctors and patients.
Experts recommend that patients with chronic conditions use pill organizers to sort and manage daily medicines as well as alerts (using smartphone apps or alarm clocks). Alerting caregivers when medication hasn’t been taken has also been shown to increase adherence rates for patients. Continuing a dialogue with medical providers is also key as they can help simplify medicine schedules by altering frequencies or dosages as applicable, and provide greater insight into side effects, drug interactions, and more.
Whether it’s neuromotor changes like you see with multiple sclerosis and Parkinson’s Disease, peripheral neuropathy like is common with diabetes, joint stiffness and pain like with osteoarthritis, or confusion and disorientation like someone suffering from dementia may experience, varying symptoms of chronic disorders can negatively impact a person’s ability to complete daily tasks. Dressing, showering, brushing teeth, eating, toileting, etc. are all key markers of basic functioning, however, they often become more and more difficult as a person’s disease progresses.
Patients and their caregivers can benefit from adaptive equipment and ease-of-use tools which simplify everyday tasks and empower greater independence and self-reliance. The best grabbing aids, for example, will allow a person to reach up to a shelf or down to the floor to pick things up (i.e. keys, jars, etc.) without having to bend or stoop over, or awkwardly strain up and possibly lose their balance. Additional tools might include bed rails, shower stools, dressing aids, and mobility aids like walkers, canes, or knee scooters.
Sometimes a chronic condition will qualify a patient for in-home health care which simply means medical professionals like nurses, physical therapists, home health aides, and speech therapists can come to the home to administer treatment and train caregivers. Unfortunately, the rules for receiving this type of skilled care are strict and not every patient with a chronic condition will qualify. Broadening the care network and finding ways to coordinate friends and family to pitch in can become important or even essential.
Some free online tools like CaringBridge.org and LotsaHelpingHands.com help people set up online signups, care calendars, meal trains, and other resources to organize a network of friends and family who can help with caregiving tasks like transportation to appointments, picking up prescriptions, making meals, etc. Various laws and rules in different states require hospitals to provide counsel and training about continuing care at home, medication management, and even skilled tasks like dressing wounds and managing incontinence following an inpatient stay for higher levels of medical intervention.
The most important step you can take is to seek help as soon as you feel less able to cope. Taking action early will enable you to understand and deal with the many effects of a chronic illness. Learning to manage stress will help you to maintain a positive physical, emotional, and spiritual outlook on life.
Pursuing mental health treatment can offer insight and support on how you can improve your coping efforts and responses to your life’s circumstances. Grounded in dialogue, therapy provides a supportive environment that allows you to talk openly with someone who is objective, neutral and nonjudgmental. You and your therapist will work together to identify and change the thought and behavior patterns that are keeping you from feeling your best. These strategies can lead to self-empowerment, peace and ultimately improve your quality of life, even alongside navigating life with the diagnosis of a chronic medical illness.
There is help available for people suffering from stress due to chronic illnesses. These include the following:
- Support groups: Support groups are a useful sharing experience. They provide an environment where you can learn new ways of dealing with your illness from other people’s coping strategies. You may want to share your own approaches, too. You will gain strength in knowing that you are not facing hardships alone.
- Individual counseling: Sometimes people have problems that are better addressed in a one-on-one setting. By taking part in individual counseling, you may more effectively express sensitive or private feelings you have about your illness and its impact on your lifestyle and relationships. There are trained mental health providers who have extensive training in coping with chronic illnesses.
- Family and couples counseling: A chronic illness often affects the entire family. It is important to find a family or couples-trained mental health provider, who can help to address this dynamic issue.
The following is a checklist of the sources and signals of stress that you may experience with chronic illness. Seek help from a mental health provider as early as possible to help you understand and cope with your chronic illness better.
Sources of stress:
- Chronic illness
- Uncertainty about the future
- Unpredictability of the disease
- Financial difficulties
- Loss of interest in things once enjoyed
- Disturbed sleep
- Changes in eating habits
- Body aches
- Cognitive issues
- Difficulty in relationships
An individual therapist or a support group can help you deal with the stress, pain, fatigue and burdened feelings that may accompany a chronic illness. Some signals that you are less able to cope include disturbed sleep, body aches, depressed symptoms, anxiety, and irritability. As a professional therapist myself, I am happy to offer my assistance or guidance to help you locate appropriate resources for your needs. Please feel free to reach out to me directly to discuss available supportive resources.
Summer Katz, M.A., LMHC
Licensed Mental Health Counselor
Cystic Fibrosis Pharmacy Patient Advocate
Office Phone: 407-898-4427 ext. 1005 or 888-307-4427
*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment. ** All listed resources have been identified for supplemental reading only, and the Cystic Fibrosis Pharmacy nor Summer Katz, M.A., LMHC is neither affiliated nor endorsing the aforementioned published material.