Â, In all families, including those in which a parent is chronically ill, there comes a time when children push parents away as they prepare for their own adulthood.  This emotional separation that occurs in adolescence is painful for all families, but there are additional challenges for parents who live with chronic illness.  Earlier childhood feelings can come back with a vengeance, including anger at the parent’s illness, disappointment in the parent for not being healthy, and shame that the parent’s illness makes her “different.”  These are developmentally normal feelings that are painful for both teen and parent to bear.  The parental closeness that helped the child to manage these feelings when he was younger may feel like a solution that no longer works.  The teen may distance himself from his parent, snarling that he “doesn’t want to talk about it.”  He may feel guilt (often unacknowledged) about leaving the chronically ill parent behind as he grows into adulthood.  The implicit response that the chronically ill parent will want to give to her teen is that the parent can bear the adolescent’s distance without withdrawing emotionally in retaliation.  This conveys the important message that “I have my own life and I will be fine as you continue to grow up and live your life.  I may have a chronic illness, but I am managing it myself.  I don’t need you to sacrifice your life in order that I can go on existing.”Â. even though no one knows why the illness occurred, the doctors do have treatments Â, It can be painful to observe other adults’ involvement with one’s child.  A father living with chronic illness may think, “I want to be the one playing sports with my daughter; I don’t want her aunt to have that closeness when I can’t.”  This is an understandable feeling.  Remember, though, that NOBODY can replace you as the parent.  While other adults can step in and provide your child with experiences important to their development, they are not and never will be a replacement for you.  These “other adults” should be conscious of bringing you into these experiences even when you cannot be present physically.  They can take photographs or video of the child for the express purpose of “showing Dad when you get home.”  They can say, “Mom will be so interested to hear all about our time together.  What do you think she’ll say when you tell her about it?” Â, Children can feel helpless when a parent is ill, and this helplessness may be expressed in a variety of behaviors.  Some children might balk at going to the hospital to visit a sick parent. Others may torment a sibling when a parent is not feeling well.  Allowing children to “help” in a way that calls upon their talents can increase their feeling of efficacy and decrease their need to act out.  An artistic child may draw beautiful pictures to decorate his father’s hospital room; a musical child may put together a special playlist of inspirational songs for her mom when she’s having a flare.  An active child can accompany Dad as he walks a bit more each day after surgery.  A fashion-forward child can be in charge of picking out a new bathrobe for Mom. Article: Resilience in Health and Illness. Listen. that might go with along with those treatments. Larger text size. Ask friends, family, and other loved ones to take your child … writing can often help kids express their emotions and escape through a fantasy world 8 Tips for Overcoming Obstacles to Exercise. fights or fall behind in schoolwork. be honest if a procedure may cause some discomfort, pain, pressure, or stinging. In addition to the everyday challenges that most people face, chronic illness adds new layers of stressors. Ask what your child is experiencing and listen to the answers Family dynamics can be severely tested when a child is sick. Try to be fully present when you are together. All rights reserved. It’s challenging to help our children with their feelings about our illness when we simultaneously are managing our own emotions.  To be the best parents we can be, it’s crucial that we put in the energy of processing our own ever-changing feelings about our illness.  As flight attendants remind us in their safety presentations, we have to put on our own oxygen mask before attending to our children’s.  This is not a task to be done in isolation.  Just as our children look to us for help in acknowledging and processing their emotions, we need to look to trusted others for support in coping with illness.  Research shows that understanding partners and peer support from similarly situated parents are particularly helpful in navigating the challenges of parenting while chronically ill.  Friends, relatives, and therapists also can help us work through our own feelings so that we have the emotional fortitude to parent well in difficult circumstances. all questions in a way your child can understand. behavior, sticking to normal routines, and avoiding overindulgence. As you explain the illness and its treatment, give clear and honest answers to It followed from the answers of respondents that they most frequently applied internal coping strategies to cope with problems – the redefinition of a stressful event as a more manageable … Â, Heightened Emotional Attunement as a Response to Physical Limitations, Many parents with chronic illness battle symptoms that limit their ability to perform physical tasks.  Lifting a child, making dinner, and playing active games are just some of the activities that can challenge us when illness is flaring.  It can feel painful both to disappoint our children and also to miss out on our own longed-for experiences. How you answer will depend not only on A chronic illness may never go away and can disrupt your lifestyle in many ways. They can keep an eye out for and to address them specifically. on clinic nights. as possible. Understand that your child’s thoughts and feelings may change over time, and help your child cope by providing distraction, remaining active, encouraging social interactions and being positive. Large text size. The stress involved in caring for a child with a long-term illness is considerable, Support from care providers, such as mental health professionals and social workers, can help families navigate some of these challenges. De Baets, S., Vahalst, M., Coussens, M., et al. so that their other kids don't feel pushed aside by the demands of their sick But you can help your child feel better by listening, Utilize support staff offered at the treating hospital. Why are so many people drawn to conspiracy theories in times of crisis? Coping as a Chronically Ill Parent Let me draw your attention to a good article by a parent on The Huffington Post called “ 6 Survival Tips for Parenting When You’re Sick .” Please read before continuing. Additional Information: Common Coping Styles of Teens Who Are Chronically Ill or Disabled; How Chronic Illness Affects the Family © 1995-document.write(KHcopyDate); The Nemours Foundation. 13 In contrast, in a recent meta-analysis by Mendelson et al, 19 the authors found that NICU-based maternal depression- and … Coping is an ongoing process and there is no right or wrong way to manage this time of your life. reality. The present finding that participation in coping support interventions improved parent anxiety and stress is consistent with findings of a systematic review and meta-analysis of coping interventions for parents of children with chronic illness in community settings. Sita's talk asks you to confront the issues surrounding chronic illness. Just like any adult, a child will need time to adjust to the diagnosis and the At times it's difficult to focus on your healthy child when there is a family member who is seriously ill. One rule of thumb is to focus on spending quality rather than quantity time with your child. Regardless of their age, it's important for kids to know that there are people Coping with a chronic illness is one thing, but trying to parent whilst living with pain, disability or health issues is next level. present. (You also may want to reassure your other kids that nothing be given over an extended time, view it in more manageable time blocks. Siblings should continue to attend school and their usual recreational The third stage in coping with a chronic illness is all about taking it in stride. also need the routines of childhood. diagnosis alone, or with the doctor or the entire medical team (doctors, social workers, take an emotional toll on the entire family. When your child leaves the hospital for home, normalcy is the Recognize that everyone handles stress differently. The foremost — and perhaps trickiest — What they imagine about the illness and hospital visits are often worse than the your child’s medical situation, but also your child's age and maturity level. Print. Let them carpool siblings to soccer or theater practice. When they come to the hospital, they can develop a more realistic picture Friends and family members may be able to help handle errands, carpools, As much as possible, try to maintain the same family routine you had before your child became ill. task for worried parents is to treat a sick child as normally as possible. Effects of Chronic Illness When you have a chronic illness, pain and fatigue may become a frequent part of your day. The next stage in the coping process is learning. then reassure your child that it will be temporary and that you'll be there to offer Ask questions and learn all you can about your child's illness. Also, consider talking with your other children's teachers or school counselors The only effective therapy is a strictly gluten-free diet which has prodigious and immediate effects on coeliac patients: the disappearance of clinical manifestations, the normalization of blood tests, the structural restoration of intestinal mucosa and the fast improvement of appetite and mood. Relaxation Techniques for Children With Serious Illness, When Your Child's in the Pediatric Intensive Care Unit, Caring for Siblings of Seriously Ill Children, Taking Care of You: Support for Caregivers. Many hospitals give parents the option to speak to their child about a long-term Your child will have many feelings about the changes affecting his or her body, and should be encouraged and given opportunities to express those feelings and any For specific medical advice, diagnoses, and treatment, How Parenting Affects a Child's Development, Invisible Wounds of the Sensitive, Emotionally Intense Child. for it (if that's the case). They may pick Present standards emphasize educating families about the child’s illness and its management. Your child may ask "am I going to die?" Kids with chronic illnesses certainly require extra "tender loving care", but impossible, but spoiling or coddling can only make it harder for a child to return that your child is right. Be sure you're sharing age-appropriate information. the illness. Regular text size. Katie Willard Virant, MSW, JD, LCSW, is a psychotherapist practicing in St. Louis. Coping with Chronic Illness -- see more articles Images provided by The Nemours Foundation, iStock, Getty Images, Veer, Shutterstock, If your child says "it's not fair that I'm sick," acknowledge behavioral changes or signs of stress among your kids. Don't give too much information, but also don't try to hide the facts. before bringing up your own feelings or explanations. depressed, and shows radical changes in eating and sleeping habits unrelated to the You want that specialist to come into the room and tell you exactly what is going on, what they know, what they don’t and how much they’re guessing with the … For example, you may need to: cope with pain or discomfort from your symptoms procedures, and frequent checkups can throw big kinks into everyone's schedules and terms what is going on. at night. Your doctor or other medical professional probably can offer It is important to offer support to these children if needed, as well as to children who are not coping so well. Measure a family’s coping with the serious or chronic illness of a child, including family integration, cooperation, optimism, social support, self-esteem, psychological stability and communication. Early Adolescence and Losing Popularity with One's Child, Tokophobia: Fear of Pregnancy and Childbirth, Sound the Alarm: The Moms Are Not Alright, Psychology Today © 2020 Sussex Publishers, LLC, Inferring Psychiatric Illness Based on Digital Activity Crosses Milestone, Sleep Biomarkers and Alzheimer's Disease Risk, Music Achievement's Academic Perks Hold Up Under Scrutiny. Instead, are all part of the team. Don't pretend brother or sister. The first hurdle is revising expectations of family life. It's also important to accurately others — relatives, friends — share responsibilities of caring for your If your child's treatment is expected to The importance of effective coordination of care is also stressed and efforts are made to incorporate family members as an integra… Kids also may need reminders that they're not responsible for the illness. explain and prepare your child for treatments — and any possible discomfort child. In all cases, parents should pay close attention, goal. of their own design. these feelings are interfering with daily function, or your child seems withdrawn, (2017).  The influence of Ehlers-Danlos syndrom - hypermobility type, on motherhood: A phenomenological, hermeneutical study.  Research in Developmental Disabilities, 60, 135-144. Â. Janotha, B. L. (2011).  Supporting parents with chronic illnesses.  Nursing, 41(1), 59-62. Here’s disability blogger and Crohn's suffer Jenna Farmer's run-down of things you can do to help you juggle the two. It's important for kids to know it's OK to feel angry about saying it's OK and completely understandable to have those feelings, and explaining Encourage your child to share thoughts and feelings about dealing with his or her illness. activities; the family should strive for normalcy and time for everyone to be together. Develop working partnerships with health care professionals. Parents with a chronic illness need a Plan B, and most likely a Plan C, for child care. who love them and will be there for them, and that they'll be kept comfortable. “Of course, you can still be a loving parent, but … Planning a It can also help them to be included in the treatment process when possible. Remember that you can't do it all. Healthy parents find taking care of their children all of the time difficult, so attempting to do everything by yourself as someone with a chronic illness can be quite challenging, if not impossible. Help your child cope. Realize that you and cultural beliefs about death. Beyond handling physical challenges and medical needs, you'll have to deal with your child's emotional needs and the impact that a prolonged illness can have on the entire family. Keep asking.. On average, chronically ill people have four days a month when they can't function … they said or did caused their sibling's illness.). that they are sick. to daily activities. The hospital, tests, and medicine may feel frightening, but they're part When your child is diagnosed with a long-lasting (chronic) illness or a disability, it is an enormously stressful time for parents and caregivers. As a chronically ill parent, this article covers many of the emotional hurdles we've faced as a family. This kind of communication doesn't always have to be verbal. 10 Mantras for Managing Emotionally Challenging Situations. Explain that While their illness may create certain difficulties, with the support of their parents and other community based services as needed most lead happy, effective and exciting lives and grow up to become productive adults. of care. Music, drawing, or Â, It’s important to acknowledge these losses, both to ourselves and our children.  When we allow our children to give voice to their emotions, we create a space for intimacy.  For example, a child may burst into tears or become angry at his parent for not being able to do what he would like.  A parent who can respond with gentle tolerance—“You are so angry that I can’t play hide-and-go-seek with you.  It really does stink when I am stuck on the couch”—lets her child know that anger is an acceptable emotion.  “I see you,” is the subtext of this parental response.  “I see that you are angry and disappointed, and I still love you.  You can talk to me about these hard feelings and I will be with you as you feel them.” Â, Flexibility is also key as chronically ill parents find ways to meet their children’s needs.  For example, a parent can say to a child demanding to be carried, “I wish I could pick you up, but my arms are not working great today.  I would love to hold you, though.  Could we snuggle together on the couch?”  Parents can offer a different type of play to a child who wants an active game, suggesting an art project or a book or even offering to watch as the child is active.  “I can’t run with you today, but I can watch you run.  Show me how fast you can go!” Â, Humor also is helpful, as a parent can imagine aloud in an exaggerated fashion the fun things she would like to do with her child if her health allowed.  “If my legs were stronger today, I think I would like to jump up to the moon.  Would you come with me?  What would we do there?” Â, It can be frightening for a child to see a parent experience illness.  One question that children wonder about is who will take care of them if their parent dies or becomes incapacitated.  Acknowledging this worry and the scary feelings that accompany it is important, as is honest reassurance.  “I do have an illness, but I have excellent doctors and nurses taking care of me.  Let’s talk together about the things you are worried about.”  Explaining in age-appropriate language what the treatment plan is and the benefits expected can help children retain confidence that adults are acting appropriately to solve a difficult problem.  Keeping children in the dark by telling them that they are “too young to understand” leaves a child alone with his fears and his imagination, increasing anxiety.Â, Children also may wonder if they can catch their parent’s illness.  Again, empathy and honest reassurance are called for.  Parents also may stress healthy behaviors as a family value, stating, “It’s important to us that we all take good care of ourselves.  That’s why we try to eat healthy foods and get enough sleep and exercise.”, Finally, children may imagine that they caused or exacerbated their parent’s illness, thinking, “If I weren’t so bad, Mom would would be well.”  Children use this type of thinking in an attempt to control that which cannot be controlled.  Our response can help children move toward a healthy acceptance that there are things they cannot change.  We might say, “My illness is caused from the cells in my body not working as they should.  I didn’t cause it, and neither did you.  Sometimes things just happen and we don’t know why.”Â, Having a network of caring adults in a child’s life is always important but takes on additional meaning when a parent lives with chronic illness.  Extended family and close friends can pick up the slack when a parent’s illness flares.  They also can fill in for a parent whose illness makes it difficult for her to engage in particular activities.  A child whose parent can’t play sports, for example, may have a relative or friend who can participate in athletics with them. Get the help you need from a therapist near you–a FREE service from Psychology Today. Work closely with the school. Think about getting professional counseling if you see signs that that they don't exist. said, or did. Most people living with a long-term illness find that knowledge is power: The more they find out about their condition, the more they feel in control and the less frightening it is. Flexibility is also key as chronically ill parents find ways to meet their children’s needs. Some emerging research conducted in the fields of medicine, nursing, and family studies has suggested that children of chronically ill parents are at an increased risk for adjustment difficulties and emotional and behavioral problems. If you or another member of your family is coping with a serious illness, you know the impact it can have on your children as they confront the anger and anxiety that can come with changing roles and routines. Reassure your child that this is not the case, and explain in simple concerns and fears. Parents and caregivers with a chronically ill child must learn effective coping strategies to help them lesson the pain and frequency of chronic sorrow. Can often help kids express their emotions and escape through a fantasy world of their own design Today... This includes ‘ anticipatory guidance ’ that reinforces the need for health to... But spoiling or coddling can only make it harder for a child 's Development, Invisible Wounds the. If parents reserve some special time for each sibling revising expectations of family life on something! ( KHcopyDate ) ; the Nemours Foundation, iStock, Getty images, Veer,,. The two it is important to know that he or she is sick will... Or theater practice for worried parents is to treat a sick child as normally as.. Listen to the parents of a chronically ill child if you and your spouse have coping! Away and can disrupt your lifestyle in many ways seem impossible, but they 're of! Images, Veer, Shutterstock, and explain in simple terms what is going.... Can about your child 's age and maturity level be temporary and that are., Invisible Wounds of the most draining and difficult tasks a parent can face develop action. In stride and escape through a fantasy world of their own design you are together on by something they,..., can help families navigate some of these challenges Back together with an illness cope remarkably well and become. Age and maturity level communication does n't always promise that everything is going on tasks a with! Parent can face coping styles, talk about them and try to painful... About dealing with his or her illness. ) babysitters and school staff about your child illness! They thought, said, or writing can often help kids express their emotions and escape through a fantasy of! Can be severely tested when a child to return to daily activities helping your child ask. To sleep. have a chronic illness need a Plan C, for child care I... Prior to this, I had no experience with a chronic illness, pain,,. The family routines as close to normal as possible illnesses certainly require extra `` tender care! Psychotherapist practicing in St. Louis know that he or she is sick providers, such as `` going to.. '' acknowledge that your child ’ s disability blogger and Crohn 's Jenna! Plan B, and meals are often worse than the reality can only make it for! Thought, said, or withdrawn talk about them and try coping with chronically ill parent be fully present you! Or other medical professional probably can offer advice on how to talk to your religious, spiritual and! With how to talk to your child 's age and maturity level faced as a coping with chronically ill parent child. 'Ll be there to offer support s disability blogger and Crohn 's suffer Jenna Farmer 's run-down of things can... Visits are often worse than the reality, friends — share responsibilities caring... Or other medical professional probably can offer advice on how to speak to a child to return daily. And Self-Management promise that everything is going on the same family routine you had before your,... For home, normalcy is the goal the most draining and difficult a. And learn all you coping with chronically ill parent about your child that this is not the case, cultural... Avoid saying `` this wo n't hurt '' if the procedure is likely to included... Baets, S., Vahalst, M., Coussens, M., Coussens, M., et al to at. Way to manage this time of your life given over an extended,... Tested when a child is one of the emotional hurdles we 've faced a! Or she is sick same family routine you had before your child ``! You answer will depend not only on your child is one of most... Tasks a parent can face not coping so well navigate some of these challenges as mental health professionals social... Offer an honest `` I do n't try to maintain their mental health as well as to children who not. From euphemisms for death such as grandparents, babysitters and school staff and hospital visits are worse.
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