The True Cost of CPTSD

Part of an ongoing series about life with complex post-traumatic stress disorder

I was feeling angry with my parents tonight — not unusual, given that they abused me for most of my life — but in particular, I was feeling upset that they would never understand the full cost of what they did to me.

There are the obvious costs, like money, and time. It is only 3/4 the way through the year, and I have already had to front $41k in treatment costs for trauma therapies, dietician sessions, ketamine infusions, and TMS treatment. In prior years, I have done treatment programs that are $20k per month, and had to pay to travel and live near treatment centers.

Time wise, I have spent around twelve years in regular therapy, over 700 hours in trauma therapy, a month at a TMS clinic for specialized treatment, and months working with a domestic violence non-profit and going to court to get a protective order against one of my parents. I had to take multiple medical leaves in the first decade of my career.

There is the mental health cost — the multiple nights a week where I sleep badly due to nightmares, the days I spend having flashbacks, emotional regulation struggles, self esteem issues, suicidality, disordered eating, negative body image, and intrusive thoughts.

Then, because trauma is stored in the body, and high ACE scores cause many physical health issues, there is the physical cost — the few days a week I am sick with IBS, food sensitivities, immune issues, joint pain, TMJ, muscle tension disorders, and heart problems. And the side effects of treatments and medications — for example, gaining fifty pounds, and losing a third of my hair.

The social cost — lost romantic relationships that couldn’t withstand the issues stemming from CPTSD, and then the multiple years I have chosen not to date, in order to make sure I love myself enough to be a healthy partner, and have developed strong interpersonal skills and emotional maturity.

The professional cost, having to stay in toxic jobs because I need good health insurance, disability coverage, and money for treatment — even though it makes my mental health so much worse.

The material cost, like no longer getting holiday cards or gifts from family my doctor says I shouldn’t see anymore for my own wellbeing.

There are also so many things, that I didn’t get to have, that I can never get a chance at again. After age ten, I never really got to be a child anymore; I had to function as an adult, because I was so parentified. I was getting my mom up so she could drive me to school and counting her beers to make sure she wasn’t too drunk to take me home. I was serving as my parents’ confidant and therapist and companion. I didn’t get to be silly at home, make mistakes like a normal kid, make messes, be loud. I lost over a decade of time that people normally get to spend being a juvenile goofball being a tiny adult. I have never had consistent parents that I could rely on, who would support me, behave in healthy ways, trust me, or follow through on their promises to show up, pay for things, or care for me.

And then there are all the things I will never have in the future, the future cost. I can’t have holidays with my biological family, because they are still active abusers. They are mired in mental health issues, addiction, neglect, crime, homophobia, racism, and inescapable poverty. When I have to go to the hospital for my health issues, I don’t have family who can go with me and hold my hand, or that I can call to let know where I am. I had to leave all of my family home possessions behind when I went no contact with my parents, including heirlooms, baby photos, jewelry, and treasured items from growing up. Unless something changes drastically, I will never be able to share those things with my kids someday, to show them where they come from. I think it is unlikely that I will ever inherit any wealth from my family, whereas if I had stayed in contact, I would probably have inherited multiple properties and significant material wealth.

This is just the cost for one person. Thousands of people in our country have this disorder, and the cost is so steep, for all of us. It feels unfair. It is unfair. No one deserves to be abused and neglected, or to have to manage this level of fall out. It requires relentless advocacy — battles with insurance companies, financial planning, doctor appointments, legal research, weekends spent submitting superbills and prepping for therapy sessions, meetings with HR about accommodations. It is truly exhausting and feels so endless sometimes, especially with the non-linear nature of recovery.

So if you have someone in your life with CPTSD, try to give them as much grace as you can for the weight that they carry. Give them a hug or a smile and be as kind as you can. They have had to deal with incredibly overwhelming and painful situations over and over again, and it’s a victory that they are able to sit in front of you today.