The Emotional Toll of Having a 'Mystery Illness'

I recently responded to the question “What’s it like to live with an undiagnosed mystery illness for a prolonged period of time?” Having my own autoimmune diagnosis that used to fit this description, and working for 10 years with clientele who were often labeled as “malingerers,” and “hypochondriacs,” I understand with extreme clarity how this experience plays out and affects you emotionally. These undiagnosed invisible illnesses uniquely affect those who live with them.

Prior to my diagnosis, and during my graduate school training, I became extremely familiar with the term “worried well.” Not surprisingly, there is actually an ICD code for it (international medical coding system for diagnosing people). That label, while well-meaning, is part of the reason for so much distress. Doctors who use this label have almost instantly made up their minds about how to approach this patient regardless of what’s being presented.

As far as the emotional toll:

• You blame yourself for your symptoms, since you must be causing it if there’s no identified reason for it.
• You lose trust in your own judgment.
• You try desperately to “lifestyle your way out of it” to no avail, and beat yourself up further.
• Social relationships are harmed because those around you are sure you’re making it up, or are “nuts.”
• You feel you are somehow flawed because your symptoms occur when you “should” feel fine.

These beliefs and self-concepts are a recipe for chronic depression, anxiety and resentment.

If and when you are lucky enough to be diagnosed, here’s a list of things that can creep in:

• Relief mixed with intense anger toward all those who disregarded you over the months or years.
• Validated — this is huge.
• Worries that there is more to be found at any moment — because you’ve been validated, now you worry that everything you feel is pathological.
• Grief because learning you have a chronic illness means you will never “get better,” which is what you had been hoping for while undiagnosed.
• Freed (I know, it’s pretty paradoxical) because you can stop blaming yourself. You can identify your new “normal” and how to best function within it, and try and move forward.

If you have a mystery illness, talk to your doctor about the big picture concerns you’re having.

Presenting and trying to treat just one symptom at a time will only get you Band-Aids.

Also, know this: you are not alone.