Living with Congenital Sucrase-Isomaltase Deficiency (CSID) can be a challenge. Some individuals with CSID report feelings of shame, embarrassment, and isolation. Although these are all legitimate feelings, there are steps you can take to minimize these concerns. Talking with friends and family, journaling, exercising, and seeking professional counseling can be helpful in dealing with the emotions associated with CSID.
Parties, family gatherings, and holidays are often food-focused, which can pose a problem. Some recommendations to cope include eating before you attend, bringing your own food, and suggesting that the event be activity-based versus food-based whenever possible.
You can do several practical things on a daily basis to help you cope with CSID. Knowing where restrooms are in public places is advisable. You may also want to keep a change of clothes or underwear and extra toilet paper with you at all times. You may want to carry non-perishable snacks or meal options in your car, purse, or another convenient location. If you use medication for CSID, find the simplest way to carry and dispense it easily and unobtrusively.
When traveling, it is wise to pack your own food, if possible. You may also want to stay in a hotel that has a refrigerator for food and medication storage.
Good self-care is key as well. Getting plenty of rest and practicing good dietary compliance benefits both you and your family.
Support
Managing CSID effectively requires support. Encourage your family and close friends to learn about your condition. You can provide written suggestions on types of safe foods or food ingredients. You can also provide instructions on food-label reading or basic meal ideas or special recipes.
You should let your family members or friends know about your special food needs. Be specific about what friends or family members can do to be helpful and what things would be better left for you to handle. Ask for specific forms of support and encouragement. Understand that friends and family members are concerned about your well-being and may at times offer unwanted advice.
Some specific facts for family members and friends to remember about CSID are:
- CSID is not temporary. It is a lifelong medical condition that requires lifelong management. An individual with CSID is not sick but needs to adhere to a specific healthcare regimen.
- The individual with CSID is not just a picky eater. Managing CSID effectively often requires a modified diet. Please do not push the individuals to try new foods. Trust that they know what they can handle.
- Give individuals with CSID privacy when they are in the bathroom. While those with CSID appreciate the concern, hovering around the bathroom just compounds their potential embarrassment.
- Recognize that an individual with CSID is not using the disorder as an excuse to not engage in social activities. Making plans to go out can be problematic when considering a special diet or when CSID symptoms may arise unexpectedly. Sometimes, the pre-planning required does not seem worth the effort, especially if the individual is faced with multiple demands.
- Do not laugh or poke fun at gastrointestinal symptoms. Society in general makes bowel discussions taboo, and joking about uncontrollable symptoms is not acceptable.
