Loss of self, caregiving & supporting someone with CPTSD

I didn’t have a name for it.

I was researching the impact of caring for someone with complex post traumatic stress disorder (CPTSD) when these words jumped at me:

Caregiving tasks interfere with many other responsibilities, for example providing emotional support the person affected, in addition to regular family duties, demands on time, being a reference for family matters, thus leading to feelings of loss of self.

Mastering life together – symptom management, views, and experiences of relatives of persons with CPTSD: a grounded theory study

At first, I felt frightened as questions flooded my mind:

Was this true? Had I lost myself? Had I come close to it?

It was honestly a terrifying thought but as I calmed down and sat with it, I knew it had almost happened. There were periods when my partner was not doing well or unable to work I had felt dangerously close to sinking into something I could not identify at the time. Now, I felt I had a name for it.

Loss of self.

Loss of self and caregiving

We do not yet think of the link between caregiving and being in a relationship with a person with CPTSD. As a society, we still tend to think of caregiving within certain contexts like Alzheimer’s, cancer, caring for an elderly person or a child.

I wonder if this needs to change.

Caregivers are people who have social, personal and intimate relationships (as friends, family members or partners) with individuals who have disabling physical health conditions, are frail due to aging or disability or have mental health challenges (or all of these).

The Caregiver Identity Crisis

Caregiving has been a part of my experience as a partner and perhaps it is part of yours too – even if you have not identified it as such. CPTSD is a serious mental health condition with a profound impact on all areas of life. Sometimes people require hospitalization, sometimes they cannot work, sometimes the wrong clinical interventions create more instability. There are many ways people’s lives are affected by it.

As such, it might, when appropriate, benefit partners, loved ones, and trauma survivors to frame the role of those who support persons with CPTSD as caregivers.

We also need to think broadly about the impact of caregiving. Most are familiar with the impact on mental or physical health, financial strain or isolation, we may be less likely to identify ‘loss of self’.

Caregiving can also result in feeling a loss of self identity, lower levels of self esteem, constant worry, or feelings of uncertainty.

How can being a caregiver affect my mental health?

What is loss of self?

Loss of self is not a single experience nor does it happen overnight. Usually, it happens as a slow slide in which you gradually experience a sense of external and internal disconnection from parts of life and parts of self. While I don’t especially like the term ‘engulfment’ (some definitions use it), it may feel as if you are being swallowed by endless responsibilities.

Signs you may be struggling with loss of self include:

  • Loss of interest or motivation to engage in activities you once found nurturing
  • Increased social isolation
  • Decreased focus and attention
  • Changes in self-perception
  • A sense of disorientation about who you were prior to onset of stress

Some of these signs may also indicate other issues besides loss of self. To learn more, read my article: Are you worried about secondary trauma?

Can you avoid loss of self?

I can’t say for sure but I will share a few examples of things that have helped me. Perhaps just reading about it will give you ideas of what to do.

  • As much as possible, maintain some sort of care routine. In my case, I have run for years and I keep doing it. Please know, it doesn’t have to be exercise or time consuming. The idea is to identify one thing to which you can anchor.
  • Find another person who can mirror parts of your identity back to you. It can be a colleague, a friend, your boss, or a therapist. As a writer and business owner, I have a person involved with my business who does this for me. If it’s helpful, write down what they say.
  • Set limits in the amount of care you provide. I know this is challenging but all caregiver research emphasizes the importance of boundaries. Having a schedule of your own care is a way of setting a limit.
  • Make a practice of taking in good moments. I am sure there are others but my personal favourite tool is the acronym HEAL from Rick Hanson, PhD. You can also do this practice with the validation you receive in point two.
  • Learn to listen to yourself. If you are having trouble hearing yourself, reach out for help. Share this article if it helps give you language. Don’t wait.

You are not a failure

For those who relate to this post, I want you to know loss of self is not your fault and is certainly not a sign of weakness. It is an unanticipated result of prolonged output in situations of overwhelm. You are not a failure.

If you know a family where an adult has CPTSD, please consider ways you can support them. We must do a better job of supporting families of persons with CPTSD.