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What To Do When The Doctor Says “It’s All In Your Head”

A new phenomenon is rising in prominence in the public discussion of health.  Despite the significant improvement in clinical procedures, a small but important part of the population evades an easy diagnosis.  Often referred to as Medically Unexplained Physical Symptoms (MUPS or sometimes MUS), patients who suffer from these clusters of seemingly unrelated complaints stump general practitioners and specialists alike.

On average, U.S. patients with rare undiagnosed or misdiagnosed conditions wait a little over 7 years for a diagnosis.  The longer a patient waits for an answer to their medical mystery, the more uncertain they feel about not only their health, but also their future.  As time goes on and the uncertainty grows, the chronically undiagnosed start to believe that those around them are skeptical that their illness exists.  Eventually even they start to question, “Is it all in my head?”

Disorders That are “In Your Head”

The medical field has improved in leaps and bounds since the time of Hippocrates, but there is still a lot about the human body that is not completely understood.  Mental illness comes in many forms, and its relationship with physical symptoms can be complicated:

1. Depression

One of the most popular scapegoats for a host of MUPS is depression.  Depression is comorbid with hundreds of ailments, and unsurprisingly is also a symptom of a multitude of systemic autoimmune disorders and some other types of difficult-to-diagnose diseases.  There is a relationship between depression and fatigue, stress, pain, and innumerable other complaints. When no easy solutions present themselves, depression is usually blamed for a patient’s aches and low energy.  But when depression is also a symptom, treating it alone can be ineffective and further confuse patients and medical professionals.

2. Hypochondria

Depression is one common example of how the mind and body affect one another, but there are other mental illnesses that can manifest in strange ways.  Hypochondria, a word that has made its way into the popular lexicon and sometimes even used against the chronically undiagnosed, is in fact a mental illness.  True hypochondriacs believe they are ill although no real symptoms of disease are present, allowing their concern for their health to interfere with their relationships, jobs, and daily life.  Patients with demonstrable symptoms that do not respond to treatment are unlikely to suffer from hypochondria.

3. Other Somatoform Disorders

Tangible symptoms do not necessarily rule out a mental illness, however.  In certain types of disorders, often referred to as “conversion disorder”, “somatization disorder” or “somatoform disorder”, it is believed that the brain actively causes physical symptoms.  Unlike hypochondria, where the illness resides mostly in the patient’s mind, these types of disorders can cause pain, sexual dysfunction, and even false pregnancy in extreme cases.  Somatoform disorders are a legitimate illness and the physical symptoms that sufferers feel are real, but the underlying cause of the symptoms is psychological instead of pathological.

Which comes first: depression or disease? 

The problem with the relationship between the mind and body is that it is difficult for researchers to demonstrate that the mental illness caused the physical symptoms, or if it is a reaction to an undetected pre-existing condition.  In fact there is a great deal of controversy over the current diagnostic criteria for somatoform disorders.  After all, research does not definitively say whether the mind or the body initiated the havoc being wreaked on patients’ health.

If your doctor suggests any of these illnesses as a possible diagnosis for your condition, you should request a referral to a psychiatrist for additional assessment and a second opinion.  If you are diagnosed with a somatoform disorder by a reputable psychiatrist, you should not feel that you are being dismissed.  These disorders are just as real and life altering as other diseases, and this diagnosis does not mean that you are “creating” your symptoms.  Your focus should be on improving your health and quality of life, not what label your symptoms are given. 

If the treatments for your diagnosed mental illness do not address your health issues after a reasonable period of time, however, you should talk to your doctors about exploring other diagnoses.

Get Out of Your Head

For most patients with MUS, a mental illness is not the primary cause for their poor health.  This is little comfort to a patient who has spent countless hours in multiple doctors’ offices with nothing but a list of eliminated diagnoses and inconclusive tests to show for their efforts.  If you are starting to question if your illness is “all in your head,” you are not alone.  This is a difficult period in the journey for a diagnosis, but there are some ways to help you “get out of your head” and alleviate the emotional stress you are feeling right now.

1. Establish a Support System

Social support is incredibly important for your mental wellbeing, especially during times of stress.  Although you may feel that your close friends and family are skeptical about your illness, it is important that you try to keep them involved in other aspects of your life. 

If you are fortunate enough to have a friend or family member who has had similar issues with an undiagnosed disorder that have been resolved, they may be a good sounding board for voicing some frustrations and offering guidance on how to manage the feelings you are going through.  Sharing a unique experience with someone you trust can be cathartic, but you should be careful to respect your confidante’s limitations and remember that they are not trained professionals (unless they are).

Another way to find the emotional support that you need is to participate in a disease support group in your area or find an active online community that fits your personality.  The National Organization for Rare Diseases hosts online communities for a wide array of rare disorders, and may be a good place to start. 

You may feel that without a diagnosis you do not “belong” in any disorder-specific groups, but many of those who have been through the harrowing process of identifying their disease are supportive of others now facing the same challenges.  At first you may feel more comfortable reading the discussions without involving yourself in the conversation, but once you have a good sense of the culture of your chosen online community you should become a more active member by asking questions and sharing your experiences.

2. Seek Professional Help

While family and peer support will keep you from feeling isolated, they are (probably) not trained in counseling or medicine.  If you are experiencing depression, anxiety, or any other type of distress you should seek help from a licensed professional as soon as possible.  If you have not visited a psychiatrist before, it may be a good choice to have your primary care physician give you a referral to one. 

At the very least, the psychiatrist can assess whether a mental illness may be part of the disease and possibly exclude a somatoform disorder from your diagnosis.  They have also received specialized training and career experience that make them better able to recommend treatments for the psychological symptoms you may be experiencing. 

Finding a counselor that you trust is another good way to manage the physical and emotional stress of suffering with a chronic undiagnosed illness.  A good counselor should be able to help you find ways to manage this stress, as well as give you a safe place for voicing your doubts and concerns.  In large cities you may be able to find licensed therapists or clinicians who specialize in patients with chronic illness. 

When your choices are more limited, you should focus on finding someone that makes you feel comfortable and safe to speak openly.  The first counselor you visit may not be the best fit for you or your needs, so keep an open mind and be willing to make a change until you are satisfied.

3. Get in the Game

In many conditions, symptoms will appear at different times and possibly for different reasons.  Part of the reason that rare diseases take so long to diagnose is that doctors do not have the opportunity to see their patient’s every symptom at the same time. 

Most of us do not have the luxury of scheduling a same-day appointment when each symptom appears.  Keep a journal of your symptoms, their severity, and any influencing factors you might be important, such as how much stress you were under during that period or how much sleep you had the night before.  If you have visible symptoms that “flare”, or appear and then disappear at random or in response to some type of external factor (diet, temperature, allergens, etc.), take pictures to show your doctor. 

If you see a trend in your symptoms, use online resources to research some possible conditions that may match.  Just remember to be critical of the information you get from online sources.  Consider alternative diagnostic options like CrowdMed, which uses crowdsourcing to help patients find possible answers and suggests solutions to health problems.

For many patients with MUS, the uncertainty of life without a diagnosis can make it difficult to deal with doubts.  Worrying that “it’s all in your head” is a normal reaction, but if you believe that something is wrong with your body, do not give up on finding an answer.  Find a support system and take an active role in your diagnosis and you will be on your way to erasing the doubt and finding a diagnosis.

If you’re worried you may be suffering from a physical ailment that your physician isn’t acknowledging, consider publishing your case on CrowdMed for objective answers from a group of medical experts who will work alongside you to help you discover what is really going on.

  • Patty Alcala

    Great post. Although it doesn’t make it any easier, it does give some explanations.

    • http://popchassid.com/ Elad Nehorai

      Yeah, it’s unfortunate. But I guess that’s why CrowdMed exists, so that hopefully we CAN make it easier.

      • EliasR

        I had the exact opposite experience with CrowdMed. After suffering for years with terrible chronic pain in many areas of my body – basically injuries would just never heal – a friend of mine suggested I try CrowdMed. Besides for a few off the mark guesses (no harm, no foul), I received a number of insulting comments, suggesting that it was all in my head, or that I was someone who liked to complain too much etc.

        Bad enough to be in horrible pain, worse yet, to pay a fee and then be attacked for trying to find help.
        CrowdMed should filter ignorant, aggressive, & unhelpful comments.
        But you’ve lost me as a client for good.
        Sorry, but that’s my story.

        • http://popchassid.com/ Elad Nehorai

          Elias,

          I’m so sorry to hear that was your experience! The truth is that we have a number of features in place to prevent such comments (especially rude ones), including flagging by other medical detectives.

          If you want, feel free to email me at elad@crowdmed.com so we can talk this over more. I want to make sure you get the care you deserve, and if not, at least give us more input about how we can improve what we do.

  • Kimberly

    I am so glad for this article and so mad at the same time, but you hit the nail on the head here. I wish I had know CrowdMed existed when I was sick. I was grossly misdiagnosed for 5 long years by major hospitals and even a renowned research hospital & clinic. I was chronically anemic from intestinal bleeding. Had many severe bleeds that put in the hospital and ICU at times. Every single physician missed the highly vascular, ulcerated, bleeding cancerous tumor called a GIST Sarcoma in my small intestine. They were doing common tests, endoscopy, colonoscopy and missed the tumor. They even missed it on CT scans which I was told by an oncologist that it was “right there” on the CT scan after I was finally correctly diagnosed. He did not understand why I had been put through 7 plus scopes, camera pill studies, nuclear med scans, angiogram with catheter up my groin, and stuff I probably can’t even remember. I sat in chemo units for 5 years getting infused with IV iron which is not safe, surrounded by cancer patients and the entire time I had not one cancer, but two, but these doctors also missed my thyroid cancer. I was so tired all the time from anemia and no ferritin in my blood plus I had a thyroid with cancerous tumors all over it. I had asked the same doctors to check the lumps on my neck that my family doctor had found and they were absolutely dismissive about it and I could not get approved for care, surgery or treatment when the thyroid cancer was found. They had missed my cancers, misdiagnosed me and didn’t want anything to do with me. I was literally dumped by a hospital/clinic who touts “the patient comes first” in their marketing. I was a compliant, good patient and a well-insured one so I did not deserve to be treated this way. This is not uncommon. Patients all over the US and here in Florida are having their patient rights violated every day. Wake up people. If you do not urge your legislators to change this, it will get worse. There is no accountability, punishment or fines for patient rights being violated in my state and providers are getting away with negligence and unethical behavior.

    • susan2518

      Hi Kimberly. I too live in Florida and have been grossly mistreated as well as misdiagnosed – so has my daughter. No one wants to think outside of the box or even do their jobs appropriately. Their biggest interest is getting to the beach, their boats, the golf course or partying with their friends. It’s just one giant vacation land down here. My daughter has a kidney transplant and her after care has been so poor that it’s extremely frightening. No one where we live will take her as a patient and tell us that, “she has too many issues for our hospital system to be responsible for”. They have told us repeatedly to go somewhere else for medical care. Why do a transplant in the first place and save someone’s life, only to reject them soon after??? Basically, these medical practices and private physicians don’t want to be sued for mismanagement of care. Where are we supposed to go? We live here, my husband’s job is here, my daughter’s transplant center is here etc. We are 3 hours away from her transplant center and this has caused so many issues it’s ridiculous. Local physician’s will NOT take her as a patient due to either her insurance (Medicaid) or her conditions – Autism and a neurological disorder which is so very rare that it’s listed with NORD – the rare disease registry in Washington, D.C.

      • https://www.facebook.com/angels4patients?ref=hl Kimberly

        Dear Susan, My heartfelt apologies to you for what you, your family and your daughter have and are going through with her illness, yours and the misdiagnosis. My heart aches for you knowing how it feels to not have answers or to not trust the medical community. It is frightening as you said. I am here for you and will try to help in any way I possibly can. My experience of years of misdiagnoses, cancer, and the heartbreaking way I was treated by Mayo Clinic in Jacksonville, FL has compelled me to start the Angels4Patients foundation to help fellow patients, advocate for compassion for patients, for patient rights, the misdiagnosed and those in need of a shoulder to lean on. My experience also took to me to Capitol Hill in Washington, D.C. to meet with 5 of our FL congressmen and a senator. I continue to appeal to our state legislators and I pound on every door of every entity that has a hand in patients’ well being and safety, medically, legislatively or other wise. For every door that closes in my face, I find another to knock on. I am a pit bull, have sunken my teeth in and am not letting go. What happened to me and what happened to you and your daughter and what happens to so many fellow patients has to stop and it has to change. We must restore compassion for patients and insist on the Florida Patients’ Bill of Rights be honored and enforced and violators punished. This means that we patients must contact our legislators, write them, call the, sign a petition. Do not let this unethical, negligent behavior continue. Medical providers in Florida need to get the message loud and clear from patients that will not allow this to continue. If you give me your zip code I can send you the name(s) of your district congressional representative. Call and write your representative. Do not wait too long. Ask your representative to “submit a formal congressional inquiry on your behalf” about what is happening with your daughter. Also, you should file complaints with The Florida Agency for Healthcare Administration, call that agency’s Chief of Staff Jenn Ungrus’ office and tell her about your daughter’s care being rejected. She is a state-insured patient under Medicaid and Statute 381.026, in the FL Patients’ Bill of Rights give her rights to treatment, dignity, respect and care. She must not be discriminated against because she has a disability like autism. If you can prove these violations, then you need to file formal complaints. Also, file a complaint with the United States Joint Commission. Do not take no for an answer. I will have a petition up on line soon on Change.org about Patient Rights in Florida so hope you will sign it. My heartfelt best to you and yours. Contact me at Angels4Patients@gmail.com or at Facebook.com/Angels4Patients or Twitter.com/Angels4Patients Kimberly Elfersy, St. Augustine, FL

        • susan2518

          Kimberly: Thanks so much for your reply and all of the information. All the Best to you and yours as well.
          Susan

      • Charles Shaver

        Posted about you under the funding comments. Looking forward to reading your complete case.

  • Jason

    After trying Crowdmed and having no luck, I saw on Facebook Someone recommended John Sarno’s book “Healing Back Pain. The Mind Body Connection.” I read it and have been able to alleviate all the pain I have suffering from for 20 years. I have suffered from pain all over my body, serious back problems, chronic fatigue, constant headaches. All of it is gone now. My wife read it and her foot and hand pain went away that she’s had for many years. She had stopped running and started wearing a foot brace. Now she’s back to training for her half marathon and is completely pain free. I highly recommend this book.

  • Charles Shaver

    As a senior working-class male dealing fairly well now with decades of chronic complaints, I know only too well the ‘deer-in-the-headlights,’ ‘hypochondriac’ stare of the doctor. An alternative medicine doctor I went well out of my way to see not to long ago even suggested I see a psychiatrist. The main point of these comments is to share my finding that there is no such thing as “hypochondria.” No person in his or her left (logical) mind would pursue costly, inconvenient, frustrating medical consultation and testing if there wasn’t something wrong. There is either something physically wrong, something mentally wrong or some combination of the two.

    Only recently looking at medical diagnosis or misdiagnosis as ‘boxed’ products (resultant of now dogmatic institutions, educators and curriculum) even more recently I learned of another limiting factor while discussing my chronic minor ailments with a fairly open minded internist who had just opened a private practice (no bosses). Not in these exact words he informed me he could be held legally liable and lose his license for straying from the prescribed path. No offense intended to the majority of the doctors; victims too. Perhaps CrowdMed will ultimately help to ‘heal’ the dogma.