7 Sad Reasons Parents Of Chronically Ill Children Often Suffer Alone
As the kids get older, parents worry that because of these challenges, their children may be excluded or rejected by their peers, too.
christinarosepix / Shutterstock There is nothing more joyful for parents than to bring home an adorable new baby. Parents are excited as they watch their children take their first steps, say their first words, and fill their lives with pride at school recitals, sports activities and graduations. That said, parenting can be exhausting and stressful, even when a child is healthy.
But what if a child is not healthy and instead, has a chronic illness? Can the stress of raising a child with a chronic illness cause silent depression and despair? In some cases, it can.
Parenting through the fears and worries of everyday life
Many parents of chronically ill children experience fears and worries that weigh heavily on every aspect of their life. They may stress about their child’s challenges with speech, learning, growth, or mobility. These challenges can bring about more stress when parents worry that because of these challenges, their children may be excluded or rejected by their peers.
In addition, parents of chronically ill children experience stress while managing additional tasks. For example, chronically ill children and adults may require help with tube feedings, bathing, communicating and transportation throughout their lives.
Stress can also be experienced as parents spend hours on the phone with insurance companies or at doctor and therapy appointments supporting and advocating for their child’s care. The stress for these parents can last for more than 50 years or longer. This is because many children with chronic illnesses remain dependent throughout their adult lives.
Exposure to this type of long-term parental responsibility can cause stress to build up and untold despair that is not always addressed. Why are so many of these parents reluctant to reach out for help?
Here are seven reasons despair often remains unnamed, unaddressed, and silent
1. Parents might not recognize the depth of their despair
For these parents, the day-to-day focus is often caregiving tasks such as tube feedings, medications, transportation, therapy schedules and other time-consuming responsibilities. Parents who are caring for a chronically ill child are often absorbed by their daily routines and distracted from their own feelings. As a result, they may not recognize or address the depth of the despair they feel.
2. Parents spend an enormous amount of energy trying to stay positive
Parents who believe it is their responsibility to keep everyone positive and upbeat about the situation learn to hide feelings of sadness, hopelessness, and exhaustion. Instead, they ignore these feelings and put an exorbitant amount of effort into appearing happy, content, productive and in control.
In time, hiding vulnerabilities becomes a habit and untold despair is pushed aside, remaining unnamed.
3. Parents may attribute symptoms of despair and depression to their lack of sleep, routine, and structure
Caring for a child with a chronic illness often requires one’s schedule to become irregular and spontaneous. Parents often skip meals and stay awake all night, sometimes for several nights caring for a child who is ill. The overwhelming schedule and lack of routine prevent parents from participating in regular exercise, sleep, and nutrition.
The continuous cycle of fatigue, poor nutrition and anxiety can exacerbate or even causes symptoms of hopelessness, depression, and despair. In this case, feelings of despair may be overlooked and attributed to the lack of daily structure and sleep irregularities.
4. Parents may accept feeling despair as a natural response to worrying about a child’s illness
Parents understandably feel an array of emotions about their child’s situation. They may feel sad, worried, and anxious. They may experience significant concern about their child being excluded, rejected, and defined by the stigma of disability and chronic illness.
Since these worries are common and expected, feeling despair may be considered normal, discounting the risk chronic despair has to one’s health and ability to function. Accepting despair as normal can cause one’s level of despair to go unrecognized as a significant risk.
5. Parents may not recognize 'not so obvious' symptoms of despair
Feelings of hopelessness and despair are not always obvious. Symptoms of despair can emerge in the form of negative thinking, irritability, pessimism, loss of concentration, health complaints, drug use, and disinterest in activities that were once joyful. Despair can develop slowly and over time. “Not so obvious” symptoms often go unnoticed.
6. Parents may not recognize for how long they have felt despair
For parents caring for a child with a chronic condition such as epilepsy, leukemia, autism or mental illness, feelings of helpless, hopelessness, feelings of depression and despair may come and go for years. These parents may not recognize just how long they have felt despair and not notice how gradually feelings of despair build up. For many people, experiencing despair for two weeks or two months may significantly alarm them, causing them to ask for help.
However, for parents taking care of a chronically ill child, a short timeline of feeling despair that may alarm most people does not reflect their perspective. In their case, after taking care of a child for over 30 years, feelings of despair may have built up so gradually, they often miss how untold despair has affected their well-being.
7. Parents may accept a state of despair as normal
Parents often worry about the future, although they cannot control aspects of what is next for their child. They may worry about their child’s ability to gain medical stability and to gain independence. They also worry about how their child will cope in the future, especially after they die. This worry may accompany feelings of despair that become so familiar, it is thought of as a normal state of mind, not a risk to one’s health.
Nancy Musarra is a clinical psychologist and author of the book, the New Normal: 7 Things to Know as You Care for & Love a Child with Special Needs. She shares her clinical expertise in the area of developmental disabilities and mental health challenges through her workshops, books, and consultations.
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