As you may have experienced yourself, sometimes, when people are chronically ill and go to lots of doctors, the doctors conclude that there is nothing medically wrong. I think it’s important in these cases not to jump to a conclusion too quickly about why it has remained undiagnosed and to take seriously *all three* of these possibilities:
1) Diagnosis Error: It’s a non-standard presentation of a known disease or a rare (or frequently missed or misunderstood) disease, making it hard to get properly diagnosed. In this case, seeking out fantastic doctors (especially those with relevant expertise) may lead to a solution.
For instance, one time, I started presenting with strange symptoms and was getting sicker every week. It turned out to be due to mold! I had just moved into a new home, and there was mold hidden behind a wall about 3 feet from where I was sleeping. Once we located the mold and removed it, I recovered completely in a few weeks.
While it sometimes happens that people misattribute issues to mold exposure, I’m pretty confident that mold actually was the cause in this instance. This was due to the timing of the symptoms starting and stopping and due to the fact that I’ve never had symptoms like that prior to the event or since the event.
As another example, I know more than one person who had a fairly common disorder that doctors tend not to understand very well for some reason. In each case, it took these people quite a lot of time to get the right diagnosis from doctors.
A third example is a friend who has an unusual dietary sensitivity. For some time, nobody could figure out why they had the odd symptoms that they did. Luckily, they discovered that when they remove certain items from their diet, their symptoms completely disappear, leaving them feeling dramatically better.
2) Psychological: It’s a physiological reaction to a psychological phenomenon (such as due to stress or anxiety), or it’s a psychosomatic condition. In such cases, a psychologist may be life-changing. Note that psychosomatic does not mean that the experiences are not really felt. If you feel pain in your stomach, then you have pain in your stomach. The question is, “What is generating that pain?”
To give an example, at one point in my life, when I was going through a tremendous amount of stress, I thought that I had some kind of mysterious medical problem because of strange and intense physical symptoms (e.g., chronic nausea, random tingling in my arms, tightness in my chest). But it turned out to be all just caused by the stress and went away when I improved my coping strategies and the stressful events receded further into the past.
Another example is from someone I know who had bad pain for years. He would try to carefully work around the pain, only to eventually discover that the key to eventually ending the pain was to use his body naturally and not let the pain constrain his behaviors.
3) Unknown to Science: it’s a type of medical issue that medicine hasn’t yet discovered. All currently known disorders were at one time not known about. While there are fewer and fewer of these as science progresses, and it would be nice to think that medicine has figured it all out by this point, the reality is that there are still some things that are mysterious to science. In such cases, symptom management and lifestyle changes (that make it easier to live with the issues) may be the only option.
As an example, I have (for as long as I can remember) had trouble with my sleep, and despite going to numerous doctors, getting numerous tests, and trying numerous remedies, I’ve never resolved it. I’m still open to the possibility that whatever my sleep issue is, it’s of type (1) or (2), but I’ve come to think it’s increasingly likely to be in category (3).
My best guess is that fairly common conditions that end up grouping patients together by their symptoms (without medicine understanding the underlying causes), with myalgic encephalomyelitis/chronic fatigue syndrome being the classic example, typically end up being a mix of (1), (2) and (3) depending on the patient. Some such patients probably have a known disease that has been misidentified, others may have a psychological origin of their fatigue (such as from anxiety or depression), and others may have a medical problem that is not yet known to science.
If you or a loved one has been ill for a while, and you still don’t have a helpful diagnosis despite seeing a number of doctors, I definitely recommend staying open-minded to all three of the above possibilities. I think that people often jump to conclusions too quickly because they assume it can’t have psychological origins (because they think it wouldn’t “feel so real” if it was psychological), or they assume if doctors say they are healthy, that there really isn’t a medical explanation for their symptoms.
It’s also very worthwhile to be careful in these situations because there are numerous peddlers of fake treatments who make their living on people in exactly these kinds of situations (especially after desperation sinks in). Most (but not all) of those peddlers actually believe in their own cures, which makes them even more convincing salespeople for their useless (and sometimes actively harmful) “remedies.”
This piece was first written on September 27, 2024, and first appeared on my website on October 27, 2024.
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