Coping with Chronic Illness in theFamily
Emil Zakutny, D.S.W., LCSW, LMFT

Unlike acute illness that may be serious but can be diagnosed,
treated and resolved, chronic illness (e.g., Diabetes, Cystic Fibrosis,
Multiple Sclerosis…) continues long after the diagnosis is made.
Typically, the course of a chronic illness, absent a cure, involves periodsof active follow up, treatment, monitoring and occasional hospitalizations
followed by a return to relatively normal life. Rothmund-Thomson
Syndrome (RTS), as well as, other rare genetic disorders share thissimilarity with other chronic illnesses. Learning to live with RTS can beespecially challenging given that it is a rare disorder that is poorly
understood by the public and the medical community. Furthermore, theeffects of a chronic illness like RTS are not limited to just the patient.
Every member of the family is affected in their own unique way. Someof the ways that chronic illness can influence family life include:• Daily routines may change because of the limitations of theill member and the demands of treatment may require thatothers to be more available.
• Families may need to share care giving responsibilities; thishelps all members feel they are contributing to a loved one’swelfare and it also protects any single member fromcaregiver fatigue.
• Family members may experience strong emotions, such as
guilt, anger, sadness, fear, anxiety and depressed mood.
These are normal reactions to stress. It is useful to talk about
these emotions within the family.

• The ill member may need to find ways to be as independent
as possible, given the limitations that the illness causes.
• Genetic conditions have powerful effects on families
including; a genetic diagnosis for one family member may
mean other biological relative are at risk members, concern
about difficult treatment options, lack of cure for thecondition, the chance that additional offspring’s will inherit
the condition, and prenatal and newborn testing decisions.
• Despite the demands of the illness, families may need towork hard to maintain a sense of “normal” life. This canbenefit the ill member, as well; it may help him or her tointegrate into family life more and may reduce the illmember’s sense of guilt regarding the demands the illness
places on the family as a whole.
Each family member will be affected differently by these changes.
The challenges that each family member faces are influenced by various
psychosocial factors, personality as well as their role in the family. For
example, parents are the administrators in charge of the family’s day-today life. As such, they are responsible for making decisions regarding
the many issues and concerns that impact the family. They can easilybecome overwhelmed by all the responsibilities they shoulder,especially when they also work outside the home. With the added
accountability of caring for a child with a chronic illness, they are at riskof parenting stress. As parents, caring for your child with a with chronic
health condition may involve dealing with many things including:• Trying to adjust to the new reality that has been thrust uponyou.

• Confronting difficult family-planning decisions due tochance of inheriting the condition, and hard choices
regarding prenatal testing and termination of pregnancy• Experiencing guilt due to the hereditary nature of child’sgenetic condition• Understanding and adjusting to any new limitations• Talking to people who are supportive, including family,friends, your child’s healthcare team and support groups• Educating yourself about your child’s condition and the careyour child requires• Getting organized so that you can easily keep track of yourchild’s needs• Building a solid relationship with your child’s health careteam that enables you to feel comfortable asking questions
and to trust that the team has your child’s best interests inmind.
• Informing others (family, friends, caregivers, school) about
your child’s situation so they are able to assist you in caring
properly for your child• Getting help while your child is in the hospital so that yourother children are cared for and practical needs are takencare of• Putting systems in place at home, at school and other places
that make it easier to care for your child and manage thisnew situation• Finding ways to relieve stress that naturally come occurs
when adjusting to any new situation
Here are some approaches that might help you manage stresswhile caring for your child with a chronic condition:

• Talk to others – Talking to someone you trust and rely on
is one of the best ways to deal with your feelings. This canbe a family member, friend, support group, social worker or
psychologist or other helping professionals.
• Connect with other affected families – You are not alone.
While RTS is a very rare disorder, you can connect withother RTS families via the RTS website (rtsplace.org). Inaddition, you can participate in the RTS online support
group forum, attend the sharing and caring conferences
held annually in different states and cities. Theseconferences provide updates on RTS related medical andresearch developments and serves as an opportunity forconnecting with other families to share advice and support
one another.
• Focus on your relational wellbeing – Take care of yourself
and your partner. Every instinct will tell you to put your childfirst, but it is vital to take care of yourself physically,
psychologically and emotionally. Men and women often
report coming to terms with the diagnosis of a genetic
disorder in different ways – understanding different
responses can help one and another be more considerate
to each other and avoiding blame, guilt, anger and a host ofother emotions that can place stress on the relationship.
• Share the responsibilities – Whenever possible it is helpful
if both parents are involved with health care routines.
Working together to care for a child can help prevent“burnout” by sharing the load. Giving each other time awayfrom care duties can provide much needed breaks. It canalso help to plan time together, apart child or children, just
as you did before. Lean on family on friends for support andhelp in managing the many aspects of caring for a child witha chronic condition.

• Consider the use of respite care – Respite care is acommunity health service that can provide temporary relief
from the physical and emotional demands involved in caring
for a child with a chronic health condition. It allows parents
and caregivers time for themselves to recharge.
• Maintain good physical health – Healthy eating, sufficient
sleep, regular exercise and opportunities to engage inactivities that help you relax are important factors inmaintaining your physical and emotional well-being.
• Take time for yourself – As difficult as it may seem, try to
make some time for yourself and your spouse or partner
each week to reduce your stress. Caring for a child with acomplex health condition may seem to take up every minuteof every day. You might feel as if you have no time for thethings you use to like to do: read a book, take a walk or go
to a movie. Taking this time can really help to refresh
yourself so that you can continue caring for your child to thebest of your ability.
Parents are not the only ones who must adjust to a child’s illness.
Life changes for the whole family. Parents have to pay extra
attention to a child with chronic illness and siblings may often
feel neglected. They might also have difficulty learning to livewith the stresses of having a sibling with a chronic healthproblem. Some of the ways that siblings might feel, based onage and developmental status, include the following:• Guilt that they are not sick (Why him and not me?)• Wonder whether they might have caused their sibling’sillness• Anxious about becoming sick themselves given thehereditary nature of genetic disorders• Jealous and wish they could become the center of thefamily’s attention• Angry if they are asked to assume more household chores
than their sibling with chronic health problems• Guilty when they resent the additional responsibility, they
are tasked with• Embarrassed or angry when strangers stare at their brotheror sister in a wheelchair, or when other children tease theirsibling because he or she looks different
Knowing that siblings have their own set of challenges, it can be
helpful for parents to be mindful of some of their parenting
behavior. For example, in attending to the needs of your childwith chronic illness, you may be neglecting or creating unfair
expectations for your other children. At times, siblings may feel
invisible unless they demand attention. However, siblings canlearn to participate in the family and feel pride and love in helping
their brother or sister with his or her health problem. The
presence of a family member with chronic illness provides
opportunities for increased empathy, responsibility, adaptability,
problem solving and creativity. Furthermore, parents can help
by incorporating some of the following the following tactics:• Try to establish some balance between the needs of yourchild with chronic health problem and those of your otherchildren• Spending some time with each child individually may help
• Develop a special relationship with each of your children• Keep in mind that siblings need to have honest information
about their sibling’s illness and to have their questions
listened to and answered• Consider getting individual, family or group counseling if
attempts to resolve difficult family dynamics have been
unsuccessful
How might your child be affected by their chronic illness? The
psychosocial impact of a genetic diagnosis on a child and his or
her family is difficult to predict given that every person andfamily is different. A genetic diagnosis can provide a great
benefit to the patient and family when the condition is rare, likeRTS. Knowing the name and cause of the condition can help
make sense of the situation. Diagnoses can lead to improved
treatment options and access to support services. A geneticdiagnosis may lead to negative reactions, too. A common
response is that the science of genetics is confusing andfrustrating. Patients identified with a genetic diagnosis may
consider themselves at fault or “broken” or interpret theirdiagnosis as leading to something they cannot handle. A genetic
diagnosis can lead to concerns about stigmatization.
Children with chronic illness are more likely than other children
to experience frequent doctor and hospital visits. Some of themedical procedures they undergo can, in fact, frightening or
painful. Hospital stays can also be frightening and lonely. They
will likely feel “different” than other children. Their activities may
be limited, and, in many cases, their families must change how
they live to accommodate the child.

As your child grows up with chronic illness, they will need to
discover a balance between dependence and independence.
Chronic illness may limit a child’s activities a lot or a little, andthe limitations may come and go. Consider these ideas forfostering independence:• Encourage your child to participate in as many family jobs
and activities as possible• Ensure that your child can maintain friendships with peers• Identify activities with your healthcare providers that aresuitable for your child’s condition and encourage yourchild to experience everything in life they physically can.
The more normal activities they participate in, the lessdifferent they will feel from their peers• Allow for mistakes and messes. They help to model foryour child how to cope when things don’t work out as
expected• Provide consistent, appropriate discipline to all yourchildren. It is very important to teach your child withchronic condition the same important lessons in life. Thisapproach will also help your child feel normal.
• Assist your child in getting a variety of school-based
support services based on identified academic, social or
physical needs, as well as, psychological help should they
be struggling with anxiety and/or depression.
While families can certainly be challenged by the many
demands of raising a child with a rare chronic condition likeRTS, families can also thrive as they embrace and care for achild with a chronic illness. A child with health problems may
bring parents and other family members closer. Families –especially those who communicate openly – may bestrengthened by experiences associated with managing theirchild’s health condition. In many cases, the family’smanagement of a child’s chronic condition may provide themwith a sense of cohesiveness, mission, mastery, and pridewhich builds the resiliency of the family.

Selected References:
Coping With Your Child’s Chronic Illness, by Alesia T. Barrett
Singer.
Genetic Alliance (www.geneticalliance.org)
National Organization for Rare Diseases(www.rarediseases.org)
When Your Child Has a Disability: The Complete Sourcebookof Daily and Medical Care, Revised Edition, by Mark Batshaw
Whole Parent, Whole Child: A Parent’s Guide to Raising a Child
With a Chronic Illness, by Patricia M. Moynihan and BroatchHaig.
Young People and Chronic Illness: True Stories, Help andHope, by Kelly Huegel and Elizabeth Verdick