Parents and caregivers often have to deal with a range of emotions when a child is diagnosed with Genetic Sucrase-Isomaltase Deficiency. Immediately after diagnosis, many parents start to grieve the “normal” life that the CSID child will not have. This is to be expected. Parents 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 GSID is a genetic disorder. Parents may feel that they should have known about this condition so they would not have passed it on to their child or children. Parents 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 more anxiety to an already stressful situation.
Feeling isolated is a very common feeling associated with a diagnosis of GSID. Since GSID is uncommon, most parents will not be able to join a traditional face-to-face support group or even talk with someone who can commiserate about life with GSID. Some friends and family members may not understand the full impact of the disorder 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 they could say, “She will be really healthy.” These statements show a lack of understanding of life with GSID. 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 GSID 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 GSID. Another good option is to grow relationships with other families dealing with a chronic condition.
Fear is another common emotion experienced by parents of CSID patients. Receiving a label of a genetic condition may immediately conjure up fear and dread. To combat this, parents should educate themselves on GSID and their child’s unique situation. For most patients, GSID is not a life-threatening disorder. Most GSID patients enjoy relatively good health if they follow their treatment protocol. Parents may fear that they are not equipped to handle the difficult road ahead. If this is the case, be assured that life with GSID 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 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.
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 GSID 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 should take all the energy it required to get a proper diagnosis, and focus that energy on learning to cope with GSID.
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 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 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 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 GSID is a marathon, not a sprint, so you must train accordingly.