Some adult patients with CSID report feelings of shame, embarrassment, and isolation. Although these are all legitimate feelings, there are steps that can be taken 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 for adults with CSID. Some recommendations to cope include eating before you attend, bringing your own food, and suggesting that the event be activity-based vs. 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 benefit both the patient and his/her family.
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 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 offer unwanted advice.
Some specific facts for family members and friends to remember about CSID are: