Staying safe online is crucial for the chronic illness community

When we’re living with a rare or chronic health condition, it can be hard to find a medical professional who believes us, much less follow through with the long and tedious path to a diagnosis. My daughter Leah and I spent years traveling all over the country in search of a doctor who was even interested in helping to diagnose, and eventually treat, her hereditary angioedema.

In searching for answers to health issues, many people turn to the internet for help, but doing so can lead to even more confusion. Not only are there a variety of health conditions that could be causing one’s symptoms, but also some may even become convinced that a certain diagnosis or treatment is applicable to their situation when it really isn’t.

Another danger in doing online research is that it can lead some doctors to view us as “troublesome” patients who think we know more than the professionals. As a result, some providers may not take us seriously or might give us an incorrect diagnosis or treatment.

Plus, spending too much time on the web can lead us into a black hole of despair, potentially affecting our mental health and well-being.

But beyond these potential pitfalls of online research, there are other digital dangers the chronic illness community should be aware of.

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Online safety

We often hear about older adults — who may be less tech-savvy than younger generations — becoming victims of phishing scams over the phone or internet. But since I became part of the chronic illness community, I’ve found that I frequently receive unsolicited information about pharmacies, health insurance plans, medical conferences, and more, as well as health-related robocalls and ads for “miracle cures.” Sometimes it’s hard to tell if the information is reliable.

One small way we can protect ourselves is by improving our cybersecurity. According to my husband, who works in information technology, October is Cybersecurity Awareness Month — the perfect time to find ways to reduce the risks we face online.

Personally, I hate updating my computer, watching security training videos, and checking for spam. Even restarting my computer regularly is irritating to me! However, these basic steps are important ways to maintain our security online. I recently committed to not only deleting spam emails and phone numbers, but taking the extra step to block or report them.

If you are living with a chronic or rare disease, you already have a lot to deal with. Speaking up and advocating for ourselves is a big deal and takes time and energy. Juggling medications, treatments, family, work, and daily life can be overwhelming at times. Self-care requires planning, focus, and prioritization. While the internet can offer many benefits, including connecting with others who “get it,” it can also bring about unwanted complications.

It may be annoying, but protecting ourselves online is crucial. Take care of yourself, always.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.