What Should we call the Loved Ones of Persons with CPTSD? A proposal to use the word ‘Caregiver.’
With the recent inclusion of complex post-traumatic stress disorder (CPTSD) in the International Classification of Diseases (ICD-11), the terms CPTSD and complex trauma are growing in familiarity. Increasingly, practitioners, organizations, and laypeople are utilizing the language of CPTSD to create awareness, share information and discuss the symptoms of this type of trauma. Whether diagnosis or not, having language is important not just for the person whose symptoms may indicate CPTSD but also for their loved ones. Personally, as a writer whose focus is on education and support for loved ones of persons with CPTSD and as a partner to a person with CPTSD, it is vital to have a way to discuss the challenges of the condition and its impact on all involved.
Currently, there is the early interest shown in the experiences of loved ones of persons with CPTSD. Since 2017, the focus of my writing, speaking, and consulting has been on the impact of CPTSD on loved ones. From the beginning, I have heard many of the same concerns and frustrations from loved ones, whether partner, friend, or relative. Loved ones experience challenges in understanding complex trauma, finding information tailored to their role, and finding their own support.
In 2020, I came across a research paper on the experiences of relatives of persons with CPTSD. Mastering Life Together - symptom management, views, and experiences of relatives of persons with CPTSD draws parallels between the experiences of relatives of persons with CPTSD and the experiences of caregivers of persons with other severe and concurrent mental illness [1]. Based on my personal experience and the stories of loved ones, I propose the descriptor of caregiver is accurate and could provide a means for better understanding and supporting loved ones.
It is well known that unpaid, informal or family caregiving is common for many physical health conditions and some mental health. Research on severe and chronic mental health conditions such as schizophrenia and borderline personality disorder reference caregiving [2,3]. Given that CPTSD “...is described as a chronic condition with several severe and concurrent symptoms” [4] and that the prevalence of CPTSD is higher than schizophrenia [5], it seems wise to advocate for the use of the word caregiver as an accurate descriptor of the role of loved ones.
The research and anecdotal reports of loved ones demonstrate the similarity of loved ones’ experiences to those of other caregivers. Concerns about exhaustion, isolation, frustration, helplessness, and uncertainty about how to manage the person with CPTSD’s triggers are common. Loved ones worry about the development of their own stress disorder and mental health issues [6]. Physical health is adversely impacted, including sleep disruptions, pain and muscle tension, headaches, and increased vulnerability to flu and colds.
Currently, the primary recommended source of support for loved ones is an individual, couple, or family therapy. While therapeutic support may be beneficial, psychoeducation, social support, and stress management tools could be met in other ways [7]. Furthermore, CPTSD often impacts the employment of the person with CPTSD and, sometimes, the loved one [8]. Therefore, the financial cost of therapy may mean this option is inaccessible.
Aside from therapy, loved ones are frequently advised to seek education, engage in self-care, and find a support system. With very little tailored to loved ones of persons with CPTSD, the burden for finding and compiling such resources rests on loved ones. This advice, while well-meaning, does not consider the impact of chronic stress on integrating complex information [9]. Furthermore, although persons with CPTSD express a desire for loved ones’ involvement in treatment in order for them to have information and understanding [10], barriers such as confidentiality, an individual focus of treatment, and perceptions about caregiving, in general, prevent this from happening.
In addition to the burden of self-education and self-support, daily responsibilities of care continue and often increase when the symptoms of CPTSD are exacerbated. Financial responsibilities may fall solely on the loved one with a need to assume new employment or to increase part-time to full. Other tasks include transportation to appointments, medication monitoring, administrative tasks, domestic chores, increased parenting responsibilities, and liaising with family and friends about the affected person’s health. Loved ones provide emotional support, companionship, and help with symptom management by buffering stress, providing perspective for triggering situations, and offering distractions [11].
As discussed in the article Loss of self, caregiving and being a partner to a person with CPTSD, the benefits of applying the word caregiver to describe loved ones are several [12]. First, the caregiver communicates a role which most understands as demanding and deserving of support. Second, an understanding of the position of loved ones as caregivers potentially offers an opportunity for organizations to designate resources for
CPTSD caregivers. Examples of the provision of resources for loved ones take place in non-profit organizations [12]. Third, with recognition, non-clinical and free materials on the topic may increase in availability. Fourth, supportive learning in various formats could be made more widely available to teach about CPTSD and its impact on loved ones. Finally, recognition could lead to the development of specific peer support focused on CPTSD for loved ones.
The dilemma for loved ones is further expressed in this interview with Dr. Stadtmann.
Many of our participants in the study criticize the lack of information and would like more specific involvement in treatment for relatives. Otherwise, there is no understanding whatsoever as to what the condition is. The relative participants also said there is a great need to have several options for formal social support.
For example, a group is not for sufferers but for the relatives to exchange experiences and support each other [13].
Evidently, not every loved one will choose to identify as a caregiver. However, I believe we have the opportunity to apply the language of caregiving as a means to work towards better support for loved ones. Based on early research and from the stories of loved ones, there is a growing interest in and demand for better support and more resources. I hope that those who study and provide treatment for persons with CPTSD will recognize the severity of the challenges caregivers experience and work towards providing much-needed care for these people.
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