Parents and caregivers often have to deal with a range of emotions when a child is diagnosed with CSID. Immediately after diagnosis, many parents/caregivers start to grieve the “normal” life that the CSID child will not have. This is to be expected. Parents/caregivers must deal with the shock and pain of diagnosis and learn to accept the new reality of having a child with a chronic condition.
Guilt is a common emotion experienced, especially since CSID is a genetic disorder. Parents/caregivers may feel that they should have known about this condition so they would not have passed it on to their child or children. Parents/caregivers may also feel guilty over the amount of time it took their child to be diagnosed, questioning whether they should have pushed harder for answers or been more persistent. Guilt can be a debilitating sentiment, but it is important to address since avoiding this emotion will ultimately add additional anxiety to an already stressful situation. Some ideas to deal with guilt include turning to close friends and family for support, exercising, engaging in spiritual or religious activities such as prayer and meditation, and/or seeking professional counseling if needed.
Feeling isolated is a very common feeling associated with a diagnosis of CSID. Since CSID is rare, most parents/caregivers will not be able to join a traditional face-to-face support group or even talk with someone who can commiserate about CSID. Some friends and family members may not understand the full impact of CSID on a family’s and child’s life. They may say things like, “Oh, so he just can’t have sugar. That doesn’t seem too hard.” or “She will be really healthy.” These statements show a lack of understanding of life with CSID. Educating those involved in your child’s care is important, but ultimately, most people who are not involved in your child’s daily life will probably never fully understand. Dealing with CSID is a way of life for your family, and many people may have difficulties relating to your situation. Seeking support through online avenues will be important to find like-minded individuals who can relate to your situation in dealing with CSID. Another good option is to grow relationships with other families dealing with a chronic condition.
Fear is another common emotion experienced by parents/caregivers of CSID patients. Receiving a label of a genetic condition may immediately conjure up fear and dread. To combat this, parents/caregivers should educate themselves on CSID and their child’s unique situation. For most patients, CSID is not a life-threatening disorder. Most CSID patients enjoy relatively good health if they follow their treatment protocol. Parents/caregivers may fear that they are not equipped to handle the difficult road ahead. If this is the case, be assured that life with CSID improves over time. The diet restrictions and reality of dealing with a chronic condition may seem overwhelming at the beginning, but in time, it will just become part of your family’s new “normal”.
Other emotions that may be felt by parents and caregivers of a CSID child are denial, disappointment, anxiety, embarrassment, frustration, powerlessness, resentment, and sadness. Caregivers should allow themselves to feel these emotions as they surface and work toward resolution in order to be a source of support for their child. Techniques for dealing with all these negative emotions could include joining an online support group; talking with friends, family, or clergy; journaling; engaging in religious activities; exercising; and seeking professional counseling if needed.
Finally, you may just feel angry. Here is a unique perspective by author Harold Kushner in his book, When Bad Things Happen to Good People. He says,
“The goal, if we can achieve it, would be to be angry at the situation, rather than ourselves, or those who might have prevented it or are close to us trying to help us, or at God who let it happen. Getting angry at ourselves makes us depressed. Being angry at other people scares them away and makes it harder for them to help us. Being angry at God erects a barrier between us and all the sustaining, comforting resources of religion that are there to help us in such times. But being angry at the situation, recognizing it as something rotten, unfair, and totally undeserved, shouting about it, denouncing it, crying over it, permits us to discharge the anger which is a part of being hurt, without making it harder for us to be helped.”
In addition to the possible negative emotions associated with having a child with a chronic disorder, there are positive emotions that will come with the experience. These could include feelings of achievement, family closeness, strength, joy, mastery, pride, and self-confidence. Ultimately, no one will support your child like you will and that can lead to a sense of family cohesion and an appreciation for each family member.
There is also some comfort in finally having a diagnosis, even though you would not have chosen this path. Most patients with CSID have gone through months or even years of pain, discomfort, and frustration before receiving a diagnosis. There can be a sense of relief and validation once a diagnosis has been made. After diagnosis, parents/caregivers should take all the energy it required to get a proper diagnosis and focus that energy on learning to cope with CSID.
Make yourself an expert. Expertise will build up your own confidence, making you a more effective parent/caregiver. You will be the ambassador and advocate for your child, negotiating with other parents, teachers, school personnel, and medical professionals regarding your child’s needs.
Parents/caregivers of children with CSID should make a concerted effort to work on their marriage or relationship with their significant other. You will need the support of each other to walk this road, and your child needs a stable home environment. If possible, share the responsibilities of caring for your child. In most circumstances, one parent/caregiver will become the medical manager, shuttling the child to medical appointments and monitoring the diet. In this case, it is essential to make sure that the non-medical manager parent/caregiver feels involved and vital in the process. Sharing the burden is beneficial to all. Single parents can reap similar benefits of assistance and encouragement by sharing the burden with another family member or close friend.
Finally, take good care of yourself. Get adequate rest, eat well, take time for yourself, and reach out to others for support. Life with CSID is a marathon, not a sprint, so you must train accordingly.