Five Things You Wish Your Friends Understood about CSID
Living with Congenital Sucrase-Isomaltase Deficiency (CSID) – a rare disorder that affects a person’s ability to digest sucrose – can be challenging, especially when your peers just don’t seem to get it. Have you been struggling with gut symptoms that impact your daily life? While you may not be diagnosed with sucrose intolerance quite yet, you may have a friend who has been. Here are five things they want you to know about the disease.
1. I am not just a ‘picky eater
Many of my friends think I’m being fussy, but I’m not a picky eater, nor am I being difficult. Trust me, I wish I could indulge in some old-time favorite foods like apples, bananas, garlic, corn, and the occasional slice of pizza! Rather, my diet is medically necessary and not my choice. Most of my friends don’t realize that it’s not just sugary treats that need to be avoided; sucrose is found in many healthy foods like fruits and vegetables too.
2. It’s not the same as you feeling bloated after too much pizza
Sure, anyone might get an upset stomach, bloating, or diarrhea every once in a while – especially after indulging too much. However, for me and others with CSID, it can be explosive and painful all the time, interfering with my quality of life and health. It is not just a typical stomachache I can “deal with.”
3. I need my privacy more than you think
One part of living with CSID is not really knowing when my symptoms will flare up. This means I could have painful bloating or diarrhea come on in the middle of a meeting, at work, on vacation, or during our brunch date. Simply put, I need my privacy, especially when it comes to the restroom. I like having my own space, and easy access to a bathroom is important for me when we’re out and about.
4. Social gatherings can bring on anxiety and make me feel like I’m a burden
Due to my symptoms and limited diet, I sometimes feel like a burden at parties and social gatherings. Some of my family and friends are understanding, but at times I feel like I’m being a pain or am bringing down the mood.
To help with this, I often bring my own meals or ask the host to alter the food menu to ensure there’s something I can enjoy. Some people are open to suggestions, but others resent the fact that their plans had to be changed. All I ask is for your understanding and a bit of flexibility, so I can join in on the fun too!
5. Living with CSID can feel isolating at times
It’s hard not to feel like the odd one out at times when what I want most is for our friendship to be “normal.” Since CSID is rare, I often feel isolated and fear that my friends and family won’t understand what I’m going through. When I’m out with friends, I sometimes feel embarrassed by my symptoms – like diarrhea – since I can’t control them. It really helps to talk it through and get your support, so I don’t have to feel so alone!
Hopefully, this helps you understand your friend a bit better, so you can improve communication going forward! Does this sound like something you or a friend are dealing with? To learn more or for a test that may help your doctor diagnose if you have CSID, we recommend you make an appointment with your doctor to evaluate your symptoms.
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