By Artur Olesch, digital health journalist, researcher, and blogger based in Germany (Berlin).
Patients with venereal diseases, mental disorders, or some skin problems are often afraid to visit a doctor. How can we help people with stigmatized, embarrassing diseases?
Last week I watched “Embarrassing bodies” online. In this popular 2007 documentary-style series, Dr Christian Jessen and Dr Dawn Harper help patients with neglected health problems. Of course it’s only a TV show, but it draws attention to the fact that embarrassing illnesses can leave many people feeling isolated. For these patients we need personalized diagnosis alternatives.
Me and my problem
“Recently I’ve noticed some strange changes on my skin and I don’t know what they could be. It worries me a lot. Has anyone had anything like this, and can you tell me what I should do? What is it? Please help.” The Internet is full of posts like this. Medical websites, Facebook pages and specialized patient portals have become places where anyone can seek support and find answers to health problems. Unfortunately, the advice and opinions come not from those who have appropriate knowledge, but from people we trust and who have the same problems, namely fellow sufferers. Why do some people prefer to diagnose themselves on the Internet instead of going to the doctor? Why is this trust more important than professional knowledge?
From rashes, varicose veins or athlete's foot to serious sexually transmitted diseases and mental disorders, there are hundreds of ailments which patients would prefer not to share with doctors. They have many reasons: stigma, fear of judgment by the doctor, lack of sympathy from doctors in the past, or the desire to keep a secret in a small town or village where everyone knows each other. A patient with an itchy rash in an intimate area may try to deny that the cause is an STD. In this case, diagnosis by a doctor can mean having to admit a shameful story about one’s private sex life and irresponsible behavior. Thoughts like “What if someone else finds out?”, “I can’t admit to being so irresponsible” or “I have a family and I have to keep this a secret” are sometimes so strong that patients choose to suffer rather than look for professional help.
A person who constantly feels sad and isolated from society may try to explain it as ordinary sadness for which there is no need to see a doctor. While seeing a psychiatrist and being diagnosed with depression is no longer a problem in big cities, the threat of being stigmatized is still high in small communities. Many of us have a deep-rooted conviction that if it's not life-threatening we shouldn't bother the doctor, and if it’s embarrassing we have to avoid the doctor.
One medical standard for all
Many diseases are left undiagnosed and untreated simply because of their negative perception in society. Consequently, many patients are left neglected. Modern medicine seems to have forgotten how different people can be and how individual their needs are. Rather than changing patient behavior, the Internet has only exposed long-hidden problems. Although it has existed for decades, the idea of one health care system that “fits all” still remains elusive. We cannot expect those suffering from an illness to go directly to a doctor for diagnosis.
“Many prefer to suffer rather than expose their secrets face-to-face. From this state of mind, the patient enters a tunnel of isolation and fear.”
A person who is experiencing worrisome symptoms or changes in their state of health is faced with a brand new situation. Psychological reactions can vary widely, from paralyzing thoughts, to the need for an answer as quickly as possible, to denial. Some just want to hide the problem because they’re ashamed or embarrassed to ask a doctor. Many prefer to suffer rather than expose their secrets face-to-face. From this state of mind, the patient enters a tunnel of isolation and fear. What they do next is to use a search engine. The answer they get is a flip of a coin, and often only increases their anxiety. Unfortunately, many people do this automatically, without understanding that the Internet is not a medical encyclopedia – anybody can publish content online. The search results depend on algorithms according to which the first pages displayed are the most popular, not those with the most relevant information. Time is passing, the right diagnosis is delayed, and the patient is receiving contradictory opinions or may even find information that threatens their health.
When a doctor is not an option, AI can help
The “Embarrassing bodies” program covered 120 different conditions. Every week it attracted a record-breaking audience of 4 million. An STI (sexually transmitted infection) checker on the show’s website has been used by more than one million people. “70% of the population suffer from an embarrassing illness,” claim the program producers. But how do we define an “embarrassing disease”? The lack of a definition makes the problem more complex. What might be embarrassing for one person is not embarrassing at all for another. It all depends on personal experiences, environment, education, societal values, family relations and personality type.
For these patients we need an alternative source of support, one that can eliminate the cause of the problem, i.e., face-to-face communication, at least in the initial stage, when a patient is first confronted with the disease. Credible information can empower the patient to take the right next step – to see a doctor or, if possible, to start self-treatment. This is a niche that can be filled by AI-based online symptom checkers. These are the best alternative for patients who, for various reasons that we should not judge and must accept, simply prefer an anonymous health assessment. They need to have a choice on how they interface with health care. Artificial intelligence and the Internet have created new possibilities, covering previously unmet needs. What’s more, they provide options that are safer, medical knowledge-based and verified by professionals, in contrast to internet search engines.
Personalized medicine promises better treatment. We should also consider personalized healthcare, so that everybody gets help in their preferred way, time and place. Symptom checkers do not replace doctors, but they do offer real help, such as when people are ashamed or embarrassed to see a doctor in person. Instead of blaming patients or trying to force them to change their behavior, it’s much more effective to understand them and provide them with a suitable tool. Modern technologies in the form of symptom checkers make this possible.
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