Interpersonal Issues for the CSID Patient
Parties, family gatherings and holidays are often food-focused, which can pose a problem for adults with Congenital Sucrase-Isomaltase Deficiency (CSID). 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.
There are several practical things you can do 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 for you 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/or medication storage. Good self-care is key as well. Getting plenty of rest and practicing good diet compliance will be beneficial.
Managing CSID effectively requires good 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 them with instructions on food label reading, 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 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 will require lifelong management. A CSID patient is not sick, but needs to adhere to a specific health care regimen.
- The person with CSID is not just a picky eater. Managing CSID effectively often requires a modified diet. Please do not push the person with CSID to try new foods. Trust that a person knows what he/she can handle.
- When in the bathroom, please give the person with CSID privacy. While those people with CSID appreciate the concern, hovering around the bathroom just compounds the patient’s potential embarrassment.
- Please recognize that a person with CSID is not using the disorder as an excuse not to 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 for these considerations does not seem worth the effort.
- Please do not laugh or poke fun at gastrointestinal symptoms. Society in general makes bowel discussions taboo, and joking about uncontrollable symptoms is not acceptable.