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:
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.
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.