Immediately after diagnosis, many Genetic Sucrase-Isomaltase Deficiency (GSID) patients start to grieve for the loss of the “normal” life that they no longer have. They must deal with the shock and pain of diagnosis and learn to accept the new reality of life with a chronic condition.
Feeling isolated is a very common emotion associated with a diagnosis of GSID. Since GSID is rare, most patients are not be able to join a traditional, face-to-face support group or even talk with someone who can commiserate about GSID. Some friends and family members may not understand the full impact of GSID on a patient’s life. They may say things like, “Oh, so you just can’t have sugar. That doesn’t seem too hard.” Or they might say, “It must be nice to have to avoid high calorie foods.”
These statements show a lack of understanding of life with GSID. The reality is that most people who do not have a chronic disorder won’t understand life with GSID. Family and close friends may have difficulty relating to the GSID patient’s situation. Seeking support through online avenues is important so they can find like-minded individuals who can relate to their 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 newly diagnosed GSID patients. To combat this emotion, patients should educate themselves about GSID. For most patients, GSID is not a life-threatening disorder. If they follow their treatment protocol, most GSID patients enjoy relatively good health. They may fear that they are not equipped to handle the difficult road ahead. If this is the case, they can rest 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 just becomes part of the new normal.
GSID patients may also experience denial, disappointment, anxiety, embarrassment, frustration, powerlessness, resentment, and sadness. They should allow themselves to feel these emotions as they surface and work toward resolution.
Techniques for dealing with 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. For adults dealing with GSID, depression and anxiety may arise due to the psychological impact of facing a life-long, incurable disorder. These feelings should not be underestimated. If patients have difficulty coping, they need to get help early. The family physician may offer a referral to an appropriate specialist who understands the psychological impact of chronic disorders. Although many psychologists or counselors can help, it pays off to find one who specializes in chronic disorders.
In addition to the possible negative emotions associated with having a chronic disorder, there are positive emotions that come with the experience. These could include feelings of achievement, strength, mastery, pride, and self-confidence as well as some comfort in finally having a diagnosis. Most patients with GSID have gone through months or even years of pain, discomfort, and frustration before receiving a diagnosis, so there can be a sense of relief and validation once a diagnosis has been made. After diagnosis, patients should take all the energy it required to get a proper diagnosis and focus that energy on learning to cope with GSID.