Technology has brought about some amazing things that we historically haven’t had access to, even in the short time that I’ve been around to witness them.
The smartphone era didn’t take off until the introduction of the iPhone in 2007, so we’ve had phones in our pockets for less than 20 years, but if you asked anyone, it’s hard to remember a time without having a cell phone.
Technology also allows us to create a community around our hobbies and interests. Whether you’re big into playing video games or any other hobby, you can find someone with similar interests to discuss those things with, which is revolutionary. There was a time when you had to go out and have conversations to figure out what people were interested in, and then, if you were fortunate and had an obscure hobby, you might meet just one other person interested in that thing.
The Shift to Online Health Communities
One massive thing technology has impacted is the health community. For a long time, when people were diagnosed with medical conditions, it felt like a lonely venture where only you and the medical professional team that you worked with knew about the diagnosis. Getting information about the condition was tricky, and you needed to ask your doctor questions about how to navigate the condition successfully. The introduction of Online Health Communities (OHCs) helped patients create and build communities with other patients and medical providers.
The National Library of Medicine made MEDLINE publicly accessible in 1997, finally easily giving resources and access to information to patients that weren’t previously there. What followed was the development of interactive online health communities like we see today, where patients and medical providers can interact and learn from one another about different conditions and diseases.
Stanford Social Innovation Review put out a great article in 2018, ‘The Emerging World of Online Health Communities, ‘ that discusses all the things OHCs can bring to the table to break the traditional hierarchy sometimes found in the medical community. It’s important to remember that doctors and patients must create this balanced relationship and trust one another.
For patients, that means taking the advice of doctors who have trained and specialized for a long time in certain areas. They have worked with countless patients, gaining a unique perspective. For doctors, it means not being impatient and listening to patients and, if they mention new or worsening symptoms, taking notes because things are constantly shifting and evolving in the scientific community (including health).
OHCs Impact on the CSID Community
When I was first diagnosed with CSID (Congenital sucrase-isomaltase deficiency), I felt a great sense of loneliness that was just indescribable. I was delivered the news by a specialist in the field of gastroenterology after basically a lifetime of being told I had IBS by professionals in this same specialized field.
When I started to ask questions, I was directed to a dietician (who ended up never having worked with a patient like me) and a website (CSIDcares.org). I’m sure many people with CSID are aware of this website, but I felt like I was being shafted. I was already given the short end of the stick when it came to being able to eat food, but then having no one to ask the real questions and get answers from was just really the icing on the metaphorical cake that I couldn’t eat.
I did start to do a little bit of my own research, of course, but even in 2020, there wasn’t a lot of other information. I tried to join one group that stopped adding new members and then another group that, unless you were diagnosed in a specific way, wouldn’t allow you to join the group. I luckily found one group that accepted me and was active. It was mindboggling to me that in 2020, gatekeeping for such a rare medical condition was still practiced, so I ended up making my own online health community on Facebook and Instagram.
Honestly, I don’t know where OHCs are headed, but I do feel like they have a long way to go (especially when there are still ways to gatekeep patients who should have access to as much knowledge and information as possible to navigate their conditions.) But we should also strive to always be better, do better, help each other, and learn as much as we can.
Don’t forget that if you’re looking for an OHC for CSID these are some helpful options:
Sugar and Starch Free, No Problem 
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