In a recent conversation with Annette, a young woman who has MS (multiple sclerosis), she described to me the first time she went for a drug infusion which had been prescribed by her neurologist.
She arrived for the session using her walker, barely able to keep her balance. Exhausted, she was finally able to get comfortable in the infusion chair. As the nurse began setting up the needle and catheter injection system into her vein, she looked at Annette and asked her, “Are you sure this isn’t all just in your head?”
Now, it’s entirely possible the nurse was trying to make a light-hearted joke. But the fact that, a year later, Annette told me the story, still distressed over those words, means that it doesn’t matter if the nurse was making an attempt at humor. She upset Annette at a very horrible and vulnerable time of her life.
Those words “all in your head” have plagued patients for centuries. They are a discount; as if the provider doesn’t trust that there’s really something wrong with you. It most often stems from his/her inability to arrive at an accurate diagnosis. When he or she can’t figure it out, they turn it back on you, the patient, rather than admitting their failure. It’s dismissive, and it’s condescending.
Further, it isn’t just an occasional dig. The “all in your head” verdict is heard far too frequently, especially by 50 million patients who are diagnosed each year with autoimmune and neurological diseases, or cardiac problems.
The great majority of patients who are “blamed” in this fashion are (no surprise here) women.
If you have heard those words “all in your head” – or any euphemism that might mean the same thing – then there are some things you should know, and some steps you can take to alleviate it.
- First, you know your body better than anyone else does! If something seems “off” and you can’t shake it in a day or two, then by all means, get yourself checked, and do NOT accept any sort of verdict like “wait and see” or “it’s all in your head”. That will require a few things from you. For example, you need to be able to describe your symptoms accurately, see if you can determine any triggers for them, and keep track of dates and times. Those will all be clues your doctor can use. A journal is a great way to track these things.
- If you don’t get satisfaction from your doctor, or if your doctor doesn’t send you to a specialist, or if whomever checks you doesn’t order tests or imaging, then it’s time to find second or third opinions. If truly NOTHING can be found or traced, then at least you’ll have a baseline, so if you continue to have symptoms over the next several months, more imaging or tests can be used for comparison. It can often take years for some autoimmune diseases to be diagnosed which is why this is so important.
- Finally, if you continue to hear “it’s all in your head” – then why not put an end to that once-and-for-all? Ask for a referral to a psychologist or psychiatrist – and go talk to them. Most likely they will be able to confirm that, in fact, there is a physical root to your complaints. At that point, a doctor can no longer use “your head” as an excuse.
Of course, if all of this seems overwhelming, and you are stymied by providers who won’t take you seriously, then it’s time to call a professional advocate; someone who can help you with the sorting, the diagnosing, and fighting back in the face of dismissal or condescension. That’s what advocates do – they stick up for you to be sure YOU are getting the answers YOU need.
Back to Annette: After she shared her “all in your head” story with me, I asked her what she replied to the nurse. She told me she just let it go, but now wishes she had said something. She continues to get upset seeing that nurse once each month when she walks into the infusion center. The negativity has had a long-term impact.
I suggested it would be cathartic for her to talk to the nurse during her next infusion. It’s entirely possible it was the nurse’s sense of humor and no diss was intended. OR, it’s entirely possible the nurse did not understand the impact on her patient. If Annette would approach the nurse all these months later to report her experience and ask the nurse to comment, she would learn the truth, and the nurse would have a better idea of how to serve her patients.
That’s a collaborative approach, meaning everyone wins: Annette, the nurse, and the nurse’s future patients, too.