It’s Not All in Your Head
Several days ago, the headline “It’s All in Your Head” jumped out at me.
The author of the Journal of the American Medical Association article, Matthew Burke, is a neurologist at Harvard Medical School who specializes in neuropsychiatry. According to Burke, the problem of physicians telling patients that unexplainable symptoms are “all in their head” has become a silent epidemic, “slowly eroding patient-physician relationships, perpetuating unnecessary disability, and straining health care resources.” No kidding!
Doctors and unexplainable symptoms
The problem, Burke thinks, is that doctors fail to understand that psychological problems can cause physical symptoms. These physicians either ignore the symptoms or accuse the patient of “malingering” or imagining their problems. Burke describes a possible conversation between a patient and a doctor who thinks it’s all in their head:
“(1) the physician provides a rundown of normal investigations, (2) the patient is told they have no known medical diagnoses, (3) a brief awkward exchange occurs, and (4) little further explanation, guidance, resources, or facilitation of an appropriate referral process is given.”
Does that sound familiar? Here are a couple of posts I’ve seen on multiple sclerosis Facebook groups over the past few months:
- “I just had my ER doctor say ‘sometimes there’s not physiological explanation, sometimes it’s your depression and anxiety making you feel like that’. Yea lady, it’s all in my freaking head, thank you. So frustrated.”
- “I was just diagnosed today. After months of being told I had anxiety it was all in my head. Multiple emergency room visits with burning, numbness, headaches, blurred vision just all over feeling like poop. Finally I had a doctor take me seriously. Did the tests and I was diagnosed. All the others doctors made me feel like I was crazy and I was imagining my pain.”
People in this situation might seek out second and even third opinions. Other patients may “stumble on a fringe medical specialist or alternative medicine practitioner who may offer the ‘physical’ diagnosis they’ve been yearning for,” or they may fall through the cracks, Burke says. “The saddest part of this epidemic,” he continues, “is that if addressed early, these symptoms may be reversible; however, with delays to proper diagnosis and management, prognosis worsens considerably.”
What can be done?
Burke gives four suggestions to the medical community to reverse the “it’s all in your head” mindset:
- Research: Conduct more research into the relationships between the mind, the brain, and an individual’s overall health.
- Erase the stigma: Eliminate the negative connotations associated with unexplainable symptoms.
- Collaborate: Devote more time to consulting with patients and providing collaborative care.
- Communicate: Be transparent with and supportive of patients and provide resources.
It’s difficult to predict if any of this will find a foothold with healthcare providers, but bravo to Burke for placing this problem squarely at their feet.
You’re invited to visit my personal blog at www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Adrian Sohn
That was not my experience. I was denying it for months, years? But finally I saw a neurologist , got an MRI and he said " I'm glad to see that you can still walk. The MRI shows you have MS but it doesn't really say what your disability will be. My symptoms at the time ( 25 years ago) were that I had difficulty walking when I was hot. I kept saying its nothing but as a family doctor I knew that was not the case
ruththella r white
Yes, but you are a man. The vast majority are women that hear its all in our head. They said I loved to be in hospitals and I had a hysterical personality. In spite of abnormal test results. In 1995, my first symptoms occurred. In 1998, they worsened with nystagmus and falls. In 1999, as I walked out of neurologist's office as he angrily threw my chart like it was garbage into his chart bin.In 2018,they finally diagnosed the MS. Every single one of my disorders including a pituitary tumor and congenital heart defect were not diagnosed for 10, 20, and 30 years respectively. I am totally disabled and live in poverty. Last month I was subjected to horrific abuse and gaslighting by medical professionals. They decide in spite of documented medical illnesses that nothing is wrong with me.
MICHAEL CLARENCE MCDONALD
injured blood areas leak..cells stick to MYLIN SHEATH ON NERVES..IMMUNE SYSTEM ACTIVATES CLEANING THEM AND DISRUPTS NERVES CAUSING HEAT AND SHORTING MUSCLES FUNCTIONS......BLOCK THE LEAKS WITH PINE BARK...,
Julie Farkas
Turns out it was "all in my head." I had MS.
But the impact of the Psychosomatic and Conversion Disorder as my first diagnoses had a severe impact on my life. The stress of being told I was a, "liar and faker," exacerbated both my real illness (Multiple Sclerosis) and interactions with my family. My husband sued me for custody of our children because I was "crazy". My parents told me to "snap out of it." My siblings and friends avoided me because who wants to be around a person who is faking an illness?
But there is one sequlae of using a fallback psychiatric diagnosis as a diagnosis of last result. Many people in Facebook groups report the symptoms of PTSD after dismissive, demeaning, and disrespectful, treatment during medical appointments. And the symptoms of PTSD persist and/or intensify because both the diagnosis and any any negative comments from their treating physicians follow them to every other medical encounter.
I have panic attacks before going to a doctor. They started after all of the negative consequences I suffered from the first psychiatric diagnosis. My unpleasant medical encounters include being called a liar and faker by a doctor. I've been patted on the head and told to stop worrying about the numbness in my legs. Most recently, I was told that severe headaches were the natural progression of my disease and to go home because there was nothing to do about them. If the doctor had bothered to look at the MRI, he might have seen the large sphenoid sinus infection, (it was actually pushing my eye out of the socket) in my brain. Fortunately, I was able to get a CD of the MRI, saw the problem, and sent a screen shot to another doctor. I was in his office the next day.
I've never reported a symptom that has later been diagnosed as a medical problem, yet those first few diagnoses of Conversion Disorder and Psychosomatic Disorder inform every doctor visit. The consequence for the patient is getting prompt and appropriate treatment of medical problems.
The medical system needs to understand that diagnoses of last resort are fine for the doctor, but a real problem for the patient. And they can result in long-term problems for the patient.
Angie
Thank you sooooo much for the validation you just gave to so many of us. I also have been labelled with conversion disorder. I've spent the last ten years, as a result, searching for a doctor that would take me seriously. I'm still searching for a definitive diagnosis amidst rapidly worsening symptoms, but I'm hopeful that my current PCP, at least, actually hears me. The problem is that anyone he refers me to is automatically going to see it in my records. It really is a devastating thing to label a patient in this way.
Larry
I'm sure I have similar symptoms.doctor says your fine ,just depressed.you need to do more activity. Where do I go from here
Ed Tobias
Hi Larry,
If it's at all possible, I'd suggest you try to find another neurologist. Assuming your illness is MS, the best thing is to try to find an MS specialist. If you're in the U.S. you can find a list of specialists on the National MS Society web site.
Ed
Jessica Davis
Im currently going through this they put in my medical record that i have facticious disorder. Because ive been to er 24xs this year with no diagnosis. I get electrical shock sensations i habe an adrenal adenoma i usally have low bp but recently its been in the 200s/100s i constantly feel like im burning from the inside my face arms hands go numb i have hemiplegic migraines they said i have a lot of white matter on my brain from migraines but thats it. That its anxiety and im doing this to myself. I now refuse to go to er even if my chest feels like its crushing me. My pth is 2xs what its suppose to be but im maki g it all up and need neuro-psychiatry work up for factitious disorder and now noone will listen to me. Im so tired of the pain and fear of trying to get help im afraid I'm dying because noone cares enough to figure out whats going on.
Kate
ER’s are not the place to go for diagnostics. Why aren’t you going to your primary physician and specialists for a diagnosis. This is why after 24 visits you still don’t know what’s happening.
Leigh
A little nicer. Maybe no insurance so ER is her only option.
Vickie Bonawitz
Exactly!!!
Jennifer Disser
I really don’t understand why physicians can’t simply say, “I don’t know what’s causing your symptoms. I’ve tested for everything I can think of and the results are normal. I’m sorry I don’t know how to help you.”
Ed Tobias
Jennifer,
And the final sentence should be, "You should get another medical opinion."
Ed
Julie Farkas
But you carry the previous doctors psychiatric diagnosis to the 2nd opinion doctor. In the US, with EHRs, you don't get a "fresh start" with a new doctor. I don't believe that doctors who aren't trained psychologists or psychiatrists should be allowed to diagnosis a patient before being seen by a psychological specialist.
Elly Suter
There are things that are like Ms and then they have orphan diseases like Ms called susac syndrome get yourself to a neurologist and then asked to also have your hearing checked you could be having one of the three Triad of susac syndrome.
Gigi
I have also been told I have conversion disorder.
I actually managed to go to the best clinic in London and see an MS specialist (privately and still needed a referral), he had me do an MRI of brain and spine and it seems to be clear. But I was given no other explanation. When it started in March 2019 I felt awful, my vision felt wrong, especially when looking at lights. Also my whole body felt weak and shaky. Now I feel better but have weird tinglings that happen in random places all over my body, and the worst is the internal vibrations sometimes especially when I'm trying to sleep.
In my mind I told myself, I think this is MS, but if this was a relapse, I will let it heal and pretend like nothing ever happened until the other shoe drops. But the symptoms won't go.. I was hoping they would just go for a few years. I don't want to go back to the doctor, the wait for the MRI results almost killed me the first time around. But I fear I am making a mistake by trying to wait. Somewhere I don't want to be proven right.
Ed Tobias
Hi Gigi,
Thanks for your comments. I'm not a healthcare professional and I wouldn't try to diagnose you via the internet even if I was. However, as someone who has lived with MS since 1980 I have to say that I've never ignored a relapse. If new, or reappearing, symptoms continued long enough to be considered a relapse (at least 24 hours) I always sought treatment to try to reverse, or minimize, them. Also, the general consensus among neurologists seems to be the sooner a person with MS is treated with a disease-modifying medication the better the odds will be that the MS can be slowed, or even halted. So, I think your fear is justified that you're making a mistake by delaying treatment.
I hope this has helped a little.
Ed
Dory
So after several months of waiting I finally get to see a neurologist (yay!). So for months now I’ve had symptoms of ms, it started moreso this summer, I had tingling and numbness in my fingers, toes and feet. I then started to have left arm and leg weakness, headaches and eye pain, numb groin and sexual issues, low mood, blurred vision, difficulty txt’n and typing, vertigo, bouts of feeling sick for no apparent reason. Bowel issues also. I’m sick of feeling so tired and not ‘right’.
Over the last 3 weeks I’ve felt a little better and apart from some weakness still have felt ok. Typical when I see the neurologist!
So after a long discussion of how I’ve been feeling, what makes me feel worse, better and generally spoke about mood and depression. I was told - and get this! Well you look well! Jesus! Yeah I know I look well but how I actually feel is the complete b opposite! She told me to try Yoga, see a psychiatrist, consider any traumatic events or anything that could have an impact on my mood, whether I’m anxious or stressed (well of course I’m b anxious I’m here and have been suffering for months! And stressed? No! Not until you tell me It’s basically all in my head!)
Sorry for going on but I’m totally fed up, am awaiting an MRI (just to rule it out and for peace of mind! ) now another wait of 6-8 weeks begins. Forgot to tell her for weeks now I’ve had back pain! And kicking myself for not sticking up for myself and just sitting nodding and thinking.............well cheers! I now feel like I’m going even more insane than I already was!
Ed Tobias
I'm sorry you're going through all that, Dory. Is your neuro an MS specialist? I realize that it's not as easy to see one of those in the UK as it is here in the US, but seeing one might help. An MRI is the most important diagnostic took as far as MS is concerned. I'm surprised it wasn't ordered earlier but I'm glad you now have one scheduled. As for forgetting things during your appointments...make a list. It's important!
Good luck,
Ed
Dory
Thank you Ed :-) you’re right access to a neurologist takes some forever and I unfortunately don’t have hundreds of pounds for a private MRI. My GP was fab and made the referral as my symptoms have been going on for a some time, they have tested me for other stuff and all is fine. I am unsure if the Neuro was a specialist in MS, I am fully aware there could be other reasons for my symptoms but was surprised she basically told me it was in my head. I really would t waste anyone’s time esp in the NHS as I work for them. I’m not making my symptoms up either, they have on occasions been debilitating and prevented me from doing the things I would normally. Fingers crossed my MRI comes around fast and again thanks for you reply :-)
Margaret Hamilton
There is a long history of labeling problems presented by women as some version of 'hysteria'. An examination of drug advertising in medical journals often depicted the 'problem' patient (pictured as a woman) who could be helped with a dose of valium or whatever. Fortunately, in my case, I presented with lingual nerve numbness and the people I saw reacted appropriately to involvement of a cranial nerve. Thank God! No doubt women affected by other autoimmune diseases still struggle with the same bias deeply imbedded in medical education.
Ed Tobias
Hi Margaret,
That's true, and it's not just women. It's also other minorities. I wrote a little about this back in June.
http://multiplesclerosisnewstoday.com/columns/2019/06/05/making-invisible-patients-visible/
Ed
Jeremy schwartz
Greetings community,
I’m hoping for some advice. I’m and active duty service member with 17 years of service. For the last ten years I have had symptoms of leg/foot/arm pain and numbness lasting 3-7 days a few time a year this came along with fatigue. I started having trouble with heat and then walking this summer and fatigue like I have never experienced. Navy doc did an MRI and found T2 hyper intensities in the brain. However Navy neurologist says although radiologist called out hyper intensity and I have a history of MS like systems, my issues are just in my head for stress . I’m hiring and outside neurologist using and doctor relative for the referral. Any thoughts? Am I wasting money? I have been sucking it up for ten years and when I finally started researching this summer it seems clear I have some sort of MS or MS like symptoms. I can likely make it three more years faking my way through, but this episode really knocked me down for a month. Any help is appreciated
Thanks
J