Jessie has trouble describing the pain in her stomach. It comes and goes. Sometimes it’s a stabbing pain, and sometimes its just dull. Sometimes it takes her breath away. She wants to know what causes the pain, and what can be done about it. She’s frightened; afraid it could be life threatening. She wants an accurate diagnosis.
Jeremy suffers from headaches, sometimes 4 or 5 times a week. He has been unable to figure out what triggers them. They don’t quite debilitate him like a migraine would, but they interfere with his work, they interfere with his fun, and they interfere with the choices his family makes about everything from enjoying meals together, to going on vacation. He wants to get to the bottom of it. He wants an accurate diagnosis.
Both Jessie and Jeremy have talked to their primaries, and have been sent to specialists. Both have had tests. But neither of them has an answer, a diagnosis. So far, prescribed treatments have not improved their symptoms.
The one answer both have heard boils down to this:
“It’s all in your head.”
Granted, their doctors didn’t use those exact words. Instead, the words used were “somatoform disorder” or “hypochondriasis” or “psychosomatic illness” which sound scientific and medical, but are just official-sounding alternatives for “it’s all in your head.”
Of course, there are definite connections between one’s mind and one’s body. And certainly, our state-of-mind can affect our physical health. Stress, dealing with negative emotions, depression – all can have an negative impact on our physical health, too.
But that’s not what we are talking about here. No – what we are talking about is a problem with the doctor who has been unable to diagnose accurately. And because he can’t figure it out, or won’t take the time to arrive at a usable answer, he blames the patient.
Blaming the patient, whether it is spoken or not, is a default for a lazy or arrogant doctor who has decided she can’t make enough money or admit her inability.
Blaming the patient by trying to convince the patient that he or she is at fault, instead of taking responsibility for finding the diagnosis, is a form of gaslighting.
Gaslighting a patient is TOTALLY UNACCEPTABLE.
If you have symptoms that are unsolved and unresolved, if you have been dismissed, or told you need to do other things to make yourself happier or to reduce stress – even if your doctor doesn’t use the words “all in your head” – then it’s time for you to take command – to be the driver of your own care.
Begin with this piece of background knowledge: that is – not every illness or condition has a name. This is especially true for diseases that have evolved from environmental toxins, or even genetic mutations. It’s possible that your actual disorder is just not yet known to medical science. It seems strange, and yes, it’s very rare (probably >1%) but it’s possible that even in this day and age there are unnamed diseases. However, even if there is no name for what is wrong with you, there are usually treatments that can help relieve your symptoms.
You should never accept a default to the concept of no name until you have tried everything you can to be diagnosed accurately.
Things you can do to get properly diagnosed:
- Get a second or third (or fourth!) opinion. Seek extra opinions after tracking your symptom triggers; when they evolve, or wane, what you were doing or eating just prior, or any other tracking you can do to help your doctor arrive at your answer.
- Ask your doctor(s) for your differential diagnosis. A “differential diagnosis” is a list of possible alternatives; even those alternatives s/he has ruled out. Then explore those alternatives yourself using Dr. Google – and later share your findings with either the doctor you trust the most, or an extra opinion doctor.
- Ask for a referral to a psychologist or psychiatrist. That will totally surprise the doctor who can’t diagnose you! But more so, once you’ve met with that mental health professional you’ll either know that yes – it’s all in your head – or NO! It’s not! You’ll confirm there is something physically, not emotionally, wrong with you.
- Find a professional, independent advocate to help you out. When you are sick, or debilitated in any way, it’s extremely difficult to be balancing your need-to-know-and-be-treated, with all the roadblocks put in front of you by medical professionals who are unwilling to admit and address their lack of ability to diagnose. Finding an advocacy professional to hold your hand, and make the best contacts on your behalf is the best way to get past those hurdles. (Think of it this way: would you try to bail yourself out of jail then represent yourself in court? Of course not.)
Bottom line: No matter how difficult it is for you to get an accurate diagnosis, never accept the pronouncement OR shaded suggestion that your symptoms are all in your head. There are alternatives – and it’s up to you to seek them out.
In case you are interested:
Two years after her first symptoms appeared, Jessie was diagnosed with stage 4 ovarian cancer. She died a few months later because her diagnosis came too late for effective treatment.
Jeremy spent almost six years trying to get an accurate diagnosis before he was eventually diagnosed with SLE – an autoimmune disease called systemic lupus erythematosus. An earlier diagnosis could have slowed his disease’s progression.
In both cases, had they not been told their symptoms were “all in their heads”, both would have lived better quality, and in Jessie’s case, a longer life.
Don’t let yourself be Jessie or Jeremy! Do not allow any doctor to gaslight you into thinking your symptoms are “all in your head.”
Learn more about AdvoConnection and The Alliance of Professional Health Advocates