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The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill

BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f1580 (Published 19 March 2013) Cite this as: BMJ 2013;346:f1580

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Re: The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill

-On behalf of those with a Functional Neurological Disorder which has been listed under the Somatic Symptom and Related Disorder heading, we are admittedly against the the SSD section in the upcoming DSM-5. We have actively voiced our concerns over the past year with our pleas falling on deaf ears.

- The fact of the matter is the way it is written the term Somatic will become just another term for Hypochondria. Concern lies in how the DSM-5 Somatic Symptoms criterion, or lack there of, will read and be overly diagnosed. This will cause those without a clear reason for symptoms to be quite possibly wrongly labeled.

- There are many illnesses that could fall in this category that are not fully understood and in some eyes seen as questionable. Whether it be from lack of research or technology there are still medical mysteries and questions that need answers. It takes time and energy by not only physicians but also patients and caregivers to find coping methods when they are not readily available. A desire for better health and/or refusal to accept a diagnosis a patient knows is not accurate is not synonymous with illness anxiety. What could very well be ill perceived by a physician and possibly even an annoyance as over involvement of a patient should not be misconstrued with a negative stigmatic diagnosis such as Somatic.

-FND patients run the risk of being the first group targeted with the Somatic label. -Women are most often labeled with a FND diagnosis.

- It is insinuated that those with what are referred to as functional symptoms are in bodily distress and this is the reason for their symptoms.

- You may notice the term FND being used instead of the proposed FNSD. We will stand our ground of not having symptoms added as part of the name. No other illness is this the case. Those that suffer with this debilitating disorder will not have their lives reduced to symptoms. The fact that the majority of all research has focused in the same general direction in the past and has yet to come up with a *medically explained reason does not mean that there is not one. We will also not use the Conversion Disorder label for reason of lack of objective evidence based research to support the ideology.

- We acknowledge the SSD work group for the psychological criteria removal as a step in a positive direction. Clarifying that many of those with a Functional Neurological Disorder diagnosis do not have the expected mental health illnesses nor are they "converting" any past trauma to be the causation of their physical symptoms. We are hopeful to eliminate the emphasis of only psychological causations to these symptoms. It does not make sense to have such a focus in psychology when change of behavior is not the key issue nor does it always manifest. However, loss and/or change of neurological function is the prominent feature and needs immediate attention. This is not to diminish the psychological connections that have been connected to the disorder, rather, to address the physical symptoms that need to be attended to in a timely fashion.

- Do not mistaken our stance against this criterion as an attack on others that suffer from illnesses embodied in the Somatic label. The argument we are trying to make is: the coding as it sits will misdiagnose many and then prevent proper care. Yes, some people do suffer from Somatic Symptoms and they should not be looked down upon; they should be properly cared for and treated with respect.

- Many who suffer with chronic illnesses for whom are subjected to horrific pain with out proper care and effective treatment plans will of course run a risk of having co-morbid depression and health anxiety. This should be cause for immediate medical attention and not dismissed as Somatic.

- "It is debilitating for individuals suffering from multiple persistent somatic symptoms and distressing preoccupations. The diagnosis of Somatic Symptom Disorder may be a logical next step in recognition and treatment of these patients."

- A diagnosis of Somatic Symptoms Disorder in the new DSM-5 will not be helpful nor beneficial for anyone who receives this label. Patients that are listed under the heading (not even given the label mind you) struggle everyday with the stigmatism that is implied with being listed with this heading. It can only get worse having the actual Somatic diagnosis added to any patients file including Cancer, Stroke, Autoimmune, Cardiac, FND, etc. sufferers. Those that are ill would appreciate effective treatment plans, answers to their concerns, their voices to be heard and addressed, and not diminish the day to day struggles of their illness to bodily distress or health anxiety.

- Our contention is not with the group itself nor the doctors trying to research and treat those with this label. For the reasons stated above, we are against the changes to the SSD section in the DSM-5. The label given to illnesses under the Somatic heading and the Somatic label itself destroys lives.

- We have concern with the SSD workgroup and to a "we will fix it later approach". They are correct that the DSM-4 was in dire need of change, but for the better is not the direction they have gone. They have ignored the pleas to fix this section and fix it right the first time. There has been reasonable time to come up with an adequate criterion, Yet they have fallen short. What makes anyone think someone will come back and fix these mistakes with a revision in a timely matter? How many more people will die of real illness while being labeled Somatic, how many will be sent home to suffer in excruciating pain?

---Must we all remember this is not about a book; it is about lives. These lives and labels may intertwine and live in your home one of these days.

FND HOPE
non-profit patient advocacy organization
www.fndhope.org

***A medical explanation for some is getting closer.
http://www.rsds.org/pdfsall/JNIP-article-Cooper-Clark.pdf

Competing interests: No competing interests

21 March 2013
Bridget D. Mildon
FND patient advocate
FND Hope
PO box 783 Salmon, Idaho 83467