Parents and caregivers often have to deal with a range of emotions when a child is diagnosed with Congenital Sucrase-Isomaltase Deficiency (CSID). Immediately after diagnosis, many of you start to grieve the normal life that your child will not have. This is to be expected. You must deal with the shock and pain of the diagnosis and learn to accept the new reality of having a child with a chronic condition.
Guilt
Guilt is a common emotion experienced, especially since CSID is a genetic disorder. You may feel that you should have known about this condition, so you would not have passed it on to your child or children. You may also feel guilty over the amount of time it took your child to be diagnosed, questioning whether you 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 ultimately adds additional anxiety to an already stressful situation. Some ideas for how to deal with guilt include turning to close friends and family for support, exercising, engaging in spiritual or religious activities like prayer and meditation, and seeking professional counseling, if needed.
Feeling Isolated
Feeling isolated is a very common feeling associated with a diagnosis of CSID. Since CSID is rare, most parents and caregivers are not be able to join a traditional face-to-face support group or even talk with someone who can commiserate about dealing with 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 such as, “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 about the difficulties of living 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 is 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 who are coping with a chronic condition.
Fear
Fear is another common emotion experienced by parents and caregivers of those with CSID. Receiving a label of a genetic condition may immediately conjure up fear and dread. To combat these feelings, you should educate yourself about CSID and your child’s unique situation. For most individuals, CSID is not a life-threatening disorder. Most can enjoy relatively good health if they follow their management routine. Parents and caregivers may fear 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 dietary restrictions and reality of dealing with a chronic condition may seem overwhelming at the beginning, but in time, it just becomes part of your family’s new normal.
Other Emotions
Other emotions you may feel are denial, disappointment, anxiety, embarrassment, frustration, powerlessness, resentment, and sadness. You should allow yourself to feel these emotions as they surface and work toward resolution in order to be a source of support for your child. Techniques for dealing with negative emotions could include joining an online support group; talking with friends, family, or clergy; journaling; engaging in spiritual or religious activities; exercising; or seeking professional counseling, if needed.
Anger
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.”
Positive Emotions
In addition to the possible negative emotions associated with having a child with a chronic disorder, positive emotions will come with the experience. These could include feelings of achievement, family closeness, strength, joy, mastery, pride, and self-confidence. Ultimately, no one supports your child the way you do, and that support can lead to a sense of family cohesion and an appreciation for each family member.
Relief
There is also some comfort in finally having a diagnosis, even though you would not have chosen this path. Most individuals 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 receiving a diagnosis of CSID, you should take all the energy it required to get a proper diagnosis and focus that energy on learning to cope with CSID.
Being and Effective Parent or Caregiver
Make yourself an expert. Expertise builds up your own confidence, making you a more effective parent and 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.
Strengthening Relationships While Navigating Life with CSID
When your child has CSID, you should make a concerted effort to work on your marriage or relationship with a 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 or caregiver becomes the medical manager, shuttling the child to medical appointments and monitoring the diet. In this case, it is essential to make sure that the nonmedical manager, parent, or 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.
Self-Care
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.
