fibromyalgia fibromyalgia awareness fibromyalgia research Invisible disability awareness

Fibromyalgia and chronic pain in danger of being labeled a mental disorder

There has been a great deal of concern over the addition of Somatic Symptom Disorder’s (SSD) addition to the Statistical Manual of Mental Disorders (DSM) because of the potential for people with invisible disabilities to be misdiagnosed with this vague mental disorder.

In the past, there has been a very significant stigma associated with Fibromyalgia people have faced with their doctors and some of the stigma remains today. It is this idea that you do not have Fibromyalgia at all it is ‘all in your head’ or you have depression. It was common not too long ago to have doctors brush patients off, to have them simply not believe them and for diagnosis to take up to a decade as a result. This has caused many people early on in their diagnosis to be very careful to never discuss any emotional issues with their doctors. They may, in fact, have difficulties coping with their pain and the difficulties could cause significant emotional strain but they have learned not to trust their doctors with the emotions because some doctors will immediately go to that mental illness box instead of realizing that chronic pain is difficult to cope with in-itself and also can come with comorbid mental illnesses. Therefore, it is, in fact, dangerous to have this stigma because it makes the patient reluctant to fully disclose to the doctor for fear the doctor will dismiss the pain, dismiss the fibromyalgia and just treat what they feel is then the primary condition.

It leaves the patient in this odd place of having to prove or verify their fibromyalgia which may have existed decades before any depression let alone mental illness. With all the evidence of fibromyalgia coming to light and the research out there, with all the people diagnosed and with the treatments available this stigma should be significantly reduced. However, there are still doctors who doubt its existence or believe it is, in fact, another condition. It should not be a factor at all when a physician or a psychologist understands the nature of fibromyalgia, how that can affect someone’s behavior and moods and also looks for and treats comorbid conditions such as anxiety and depression. The concern then is that instead of taking a step forward we are taking a step backward and opening a potential doorway to past attitudes of health professionals to dismiss patients’ physical health problems.

Now with the new changes suggested by The 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, there is the potential for people to be diagnosed with a new condition. The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a manual published by the American Psychiatric Association and is the standard of mental disorders classifications. It has the set of diagnostic criteria and additional information on each disorder. People with invisible disabilities like fibromyalgia and other chronic pain conditions express a fear they might be diagnosed under this ‘new condition’ which would again put them under the heading of ‘all in your head’ and mental illness. Again not as a comorbid condition, but as a primary condition, where the actual syndrome or condition they have will once again be demoted and ignored.

Somatic Symptom Disorder (SSD)

According to Toni Bernhard Psychology Today, “People can be diagnosed with Somatic Symptom Disorder if, for at least six months, they’ve had one or more symptoms that are distressing and/or disruptive to their daily life, and if they have one [only one] of the following three reactions:

Criteria #1: disproportionate thoughts about the seriousness of their symptom(s);

Criteria #2: a high level of anxiety about their symptoms or health; or

Criteria #3: devoting excessive time and energy to their symptoms or health concerns.

…The word “somatization” refers to psychological stress that manifests in the form of physical symptoms. In other words, a person’s physical symptoms are traceable to a mental or emotional cause rather than to a physical one.”

It is not that anyone would claim that fibromyalgia is not a real condition, only that the potential for misdiagnosis under ‘Somatic Symptom Disorder’ is a risk. According to Allen Frances, M.D Psychology Today “ “The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and Fibromyalgia within the DSM-5 ‘Somatic Symptom Disorders’ section, but these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury will now become particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder. In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the ‘functional somatic’ study group were coded for ‘Somatic Symptom Disorder.’”

At the news the DSM was not going to make any changes Allen Frances, M.D. of Psychology Today made these comments regarding what he had hoped they would change but they declined to do, “I suggested simple wording changes in the DSM 5 definition of SSD that would have tightened it significantly and reduced confusion at the difficult boundary between medical and mental illness…. I also suggested adding these new items to the criteria set to reduce the most common sources of inappropriate over diagnosis of Somatic Symptom Disorder.

• ‘If a diagnosed medical condition is present, the thoughts, feelings, and behaviors must be grossly in excess of what would be expected given the nature of the medical condition.’

• ‘If no medical diagnosis has yet been made, a thorough medical work-up should be performed and be repeated again at suitable intervals to uncover possible medical conditions that may declare themselves with the passage of time.’

• ‘The concern about physical symptoms should not be not better accounted for by another mental disorder (eg Anxiety, Depressive, or Psychotic Disorder).’”

His additions would have made it more defined and specific and forcing the medical issues to be addressed and acknowledged before this diagnosis could be made. It also would acknowledge a reasonable amount of concern a person has for their health, as well as thoughts and feelings about it if they already have a medical condition. However, since they were declined, the condition as vague and open as it stands in the new addition. Certainly, it seems it is the vagueness of the wording to this condition is disturbing.

It is hard to say how Somatic Symptom Disorder’s (SSD) addition will affect people with fibromyalgia and other invisible disabilities until it has been used in practice. In theory the very reasons Allen Frances, M.D listed to restrict the definition of SSD ought to in practice prevent a psychologist from diagnosing someone with fibromyalgia with it. A psychologist should take into account their current medical condition as a significant factor and certainly be looking for comorbid mental disorders. Again the risk factor would be highest for people who have yet to be diagnosed with fibromyalgia due to the nature of the syndrome, a number of symptoms, the lack of verifiable evidence on the doctor’s side of things and the difficulty with coping with it. Unfortunately, it is easy to understand the fear that it will happen based on the fact fibromyalgia still has a stigma within the medical community and it was not too far in the past many patients confronted this very same problem in just a slightly different variation. There is more awareness about fibromyalgia, more treatment available and more ‘evidence’ to sink their teeth into if they cared to look for it but many patients have this fear because of recent history. Hopefully, history will not repeat itself and we will not see Somatic Symptom Disorder cropping up in association with fibromyalgia anytime soon. As Allen Frances, M.D Psychology Today states “DSM 5 must emphasize that physical symptoms deserve the respect of a thorough work-up before assuming their cause is psychiatric. And people with defined medical illnesses should not be casually mislabelled as also mentally ill just because they are upset about being sick.”

This is an article about the addition of Somatic Symptom Disorder (SSD) to the Statistical Manual of Mental Disorders (DSM) and how the vagueness of its definition could potentially lead to misdiagnosis of individuals with fibromyalgia or any invisible disability. This risk is there… that is not to say it will happen. It is simply that when it comes to Fibromyalgia we are aware that it certainly happened in the past and having this option available opens the possibility again. There was in the past with doctors this huge stigma with FM because some simply didn’t believe it existed so when you came to them with all these miscellaneous symptoms they would think you were just a chronic complainer, or stressed, or depressed or that it was ‘all in your head’. In was all too common for it to take over a decade for people to be diagnosed… I’ll raise my hand here. And in my case I had a good childhood doctor, but I ran into a few dumbass ones on University… one said I was chronically depressed and another at an ER visit said he simply didn’t believe in FM (this was after my actual diagnosis).  Point is we know when we run into this stigma we will not get treatment at all most of the time for whatever physical symptoms we have… because the doctor has already decided we are exaggerating or put us in a ‘mentally ill’ box. This is a dangerous stigma to have because if a person is having problems coping with their pain and disability they are not exactly going to open up to their doctor if in the past they have been treated this way… because they will believe the doctor will go ‘Ah ha… you are depressed and therefore must not have fibromyalgia at all!’. And not seeking help for comorbid mental disorders is dangerous.

However, there is less of a stigma today than there was. Or so I have been told. I have been told I talk to my doctor about chronic migraines like I have expectations of my previous history with doctors in the past. In other words… I tend to ignore symptoms until they get bad enough to mention, and if they are not bad, I don’t mention them… don’t want to complain after all. And I tend to be stoic about pain for the same reason which means my doctor never gets how much pain I am in. It’s a no win situation… because doctors have trained me to react to them the way I have and by reacting the way I do they never will understand exactly how I am or all the symptoms I have even. There can never be a really good relationship there. Which I am attempting to change. However, those are my issues. Fact is, the stigma is less than it was. And most doctors and psychologists acknowledge the roll of a chronic pain condition on mental health as well as the potential for comorbid mental health conditions. My psychologist definitely acknowledges the role of my physical condition on my mental and emotional wellbeing… she would not be the sort to say it was the other way around.

Anyway, the history is there so we remember the misdiagnosis and being brushed off. So the potential so there… for all invisible disabilities. It is in fact why I loathed the label ‘depressed’. But this one… far worse in its potential for damage. At least with depression no matter how a doctor tried to stuff you in that box eventually your symptoms would not fit there. It does not seem that way with this… not that I know how stress can manifest physically mind you, but FM has a lot of symptoms and in the beginning a lot of them would seem like manifestations of stress wouldn’t they? And imagine how long you would go without diagnosis before all those other symptoms began to crop up. https://w.atcontent.com/-/2XRjBxPu2gA/nikki.albert/55LccOiuTB-.text/Panel/Autocheck

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