No matter the topic, misinformation and lack of understanding is everywhere. When errors are made or false ideas get perpetuated, they tend to go unchecked and unchallenged usually because most of us just plainly don't know enough to even realize it needed to be corrected or looked into. And, this is completely understandable, right? We can't be expected to be informed on nearly every subject and struggle of humanity. We can try our best, but there will always be things we are still woefully ignorant on. Access to education, reliable resources, and just knowing where to even look for more information on any given topic is so hard. We're left to take our cues from those claiming to be knowledgable, go along with the basic understanding held by the general public and our loved ones, and/or just let it be and invest our attention elsewhere. When it comes to mental health, no doubt, all of these issues collide head on - multiple times over. We unconsciously acquire so much misinformation about psychological disorders by the time we're only kids - and just by casually picking things up in conversations, media, and comedy, we also tend to adopt some heftily stigmatizing ideas as well. And, if this is true even for those expressing no real interest in mental health, imagine the damage when people who do try to learn from the professionals are met with uninformed practitioners or those grossly misleading the public, their colleagues, and even their patients. This is how Complex PTSD, and most especially Dissociative Identity Disorder, have been treated for decades. We would like to start changing that.
Little by little, bit by bit, we want to undo some of that damage and raise more accurate awareness for both C-PTSD and DID. You can read more about the conditions themselves here (individual DID page coming soon!), but we also think it important to touch on what survivors with these disorders are currently going through just to obtain treatment. After all, they wouldn't be struggling to get care so badly if those in the field had more of a vested interest in them - becoming at the very least trauma-informed, or better-equipped themselves to treat a client with complex trauma. This will be an ongoing series no doubt - with many myths to debunk and important notes to impress! So, to start chipping away at that iceberg, here are 8 things we should all know about Complex PTSD and Dissociative Disorders, and the survivors who have them.
With as vast as the United States is, this is supremely disappointing. You can find the current list of those facilities here on our website. Even within those 9, many keep relocating or downsizing, some have a very small number of beds or are restricted to only certain age groups, others have had all their additional programs (like PHP/IOP) cut entirely or are so underfunded they don't run smoothly. Overall, the standard of care for trauma patients nationwide is very low.
Finding a trauma-informed unit at all is pretty scarce, but the greater drawback is that many who claim to be able to take Complex PTSD or DID patients offer them no therapeutic tools or classes designed to address their unique needs and have them intermingled with the rest of the mental health population. This might not sound like an issue, but due to the nature of a trauma patient in crisis and their high susceptibility for flashbacks, panic attacks, switching, and self-harm, being surrounded by unpredictable and sometimes volatile patients is unreasonable and unsafe. Staff also need to be heavily trained in what is an acceptable and safe way to engage with a severely traumatized patient - particularly if they are in flashback, a dissociated self-state, or critically unsafe. Units remain safest (from perpetrators and potential flight-risks) when they are locked, but an understanding that this can be also be extremely distressing for other patients is something staff need to be able to empathize with and negotiate. In short, the nuance of care required for complex trauma patients is unlike that of any other mental health condition. And yet we have less than 10 places we can safely send individuals, and many of those 10 even have their shortcomings. A couple even continue to produce more negative reviews than positive, and some of the leading facilities have proven time and again they are fantastic with some patients but are not equipped to handle ritual abuse patients. Greater education, as well as funding to produce more units in existing psychiatric hospitals is a MUST.
As a side note, there are a handful of residential facilities cropping up in various places throughout the U.S. Residential treatment centers, while valuable and a potentially great resource (especially when there's nowhere else to turn), are typically not equipped to handle clients who need stabilization or are struggling with safety. They are also more unregulated, therapy modalities can be harder to discern, units are not locked, insurance rarely participates, and they tend to be extremely small in bed-availability. While they are often very beautiful and relaxed, and nothing like an inpatient setting - they can be extremely expensive, with limited staffing, and tough to guarantee quality of treatment. And again, while they may be able to facilitate a chronically traumatized patient through a rough patch in their healing, they are often not trained or equipped to aid in crisis stabilization, and are usually far from a hospital should the need arise.
As it turns out, averages can be tough. Research in this field is still limited, and even where it exists, trauma patients aren't typically the most eager to participate in a study. However, despite research on treatment length being slightly dated, and the fact we are getting more practitioners better-able to facilitate a patient through their recovery, as well as those who can at least make an informed diagnosis more quickly -- we are still grossly behind. So, while some may want to argue this estimate is too high based only on what they see in their well-trained offices, others who have patients working well into their 15-20th year of therapy would argue it's still much too low. Regardless of the exact specificity, this is a very reasonable estimate at the moment, and is witnessed to be valid by many, many clinicians, patients, and communities of survivors fighting this battle. Now, this does not always mean 10 years of consecutive therapy - though it absolutely can and does for many. It's quite common for patients to have to stop and re-start therapy multiple times - for myriad reasons. Finances, inadequate treatment, personal unreadiness, a geographic move, unavailability of clinicians, and/or feeling stable at one point but needing to return as more things surface later - these are all very common factors for a more drawn out therapeutic journey.
Ultimately, treatment of complex trauma takes a very, very long time in even the best of circumstances. It can be extremely daunting and feel outrageously unfair to the survivor. The average of several misdiagnoses before arriving at a proper one alone, then coupled with misguided therapy, not only adds more years to the recovery but also risks turning clients away from therapy altogether. It's even been a traumatic experience for far too many. We need compassion and understanding for these survivors. To support them through this long process, no matter how many years it may take or how many times they need to stop and try again. Recovery from trauma is scary. They need our love and support, not added obstacles.
As mentioned earlier, inpatient care for complex trauma is extremely scarce. It requires a specialized unit and, for many, that will be out-of-state. Insurances rarely cover beyond their state's borders and non-participating provider agreements can be very tough to come by - let alone something we should ever expect a survivor to have to fight for themselves while in a terrible, terrible place. Because of this, many of them have to pay tens- to even hundreds-of-thousands of dollars out of pocket for care. Many facilities will not let you pay once you get in and settled and can think clearly. They often require a sizable sum up-front, before you even enter the unit. And, again, coming up with thousands and thousands of dollars that most don't have to begin with, particularly while in crisis, is a feat many just cannot accomplish. Needless to say, most go without.
How many people in the world do you know with red hair? There are at least that many people with DID in the world - though, more than likely a lot more than that. Due to fear, stigma, high rates of suicide, misdiagnoses, lack of public education, and countless other reasons, most who have DID aren't even accounted for yet. But, the bottom line is that this is NOT a rare disorder. It's only rarely talked about. And, when it is, it's very rarely talked about in a positive, empathic light. Most refuse to confront the reality of its prevalence rate, because to do that would mean having to confront causality. And, what causes DID? It's most always man's inhumanity to one another and the cruel callousness of the world. No one wants to acknowledge that or accept how rampant it is, so they sweep the survivors of such under the rug (while others go so far as to actively paint them as dangerous or truly insane, especially in media). DID is not rare. It's not a one-in-a-million case you'll never see. It is everywhere. And those suffering with it just want someone to help them after years and years of abuse, pain and neglect.
This is another fact that is just so very sad. Complex trauma and dissociative disorders are hard enough on their own, but so are depression, anxiety, OCD, addiction, eating disorders, self-harm. To have a collection of many of these at once just seems grossly unfair - yet that's the insidious nature of trauma. The ever sadder part is how many of these aching, traumatized souls find themselves in eating disorder facilities or drug/alcohol rehabs (or even jail) for the more overt or destructive symptoms, but never receive trauma-informed care of any kind. Care that is specific to complex trauma or the uniqueness that DID can play in some of these more addictive or self-sabotaging behaviors is even more rare in places like these. Additionally, when you try to "fix" an addiction or eating disorder through traditional means, without addressing the way its delicately woven and spun around the trauma, you can make them dramatically worse. This, like all bad treatment, can turn them away from therapy (or help in general) forever - or more devastatingly, push them to lose their battle before they ever had a real fighting chance.
It may be a broken record, but there is no place that the abundance of misinformation, redirection of resources, or ignorance of childhood trauma doesn't touch. PTSD in any form is brutal and terrible and all-consuming. But it's sad that in 2017, the first group of people that comes to mind for most whenever you mention trauma or PTSD, is still veterans. If our "war flashbacks" and "triggered" memes online are any indication, people really do not understand the severity of the condition at all, nor do they even attribute it to the population struggling with it the most. There is absolutely a way to keep the very real and VERY valid suffering of war veterans and those who've served in the military very present in our minds, hearts, and resource initiatives, while ALSO lifting up childhood trauma survivors and victims of sex crimes considerably higher than they currently are. They need our attention and visibility. And fast.
I bet if you call to mind any trauma survivor you know, they've also got at least one chronic (or "mystery") illness - maybe even several. In fact, it's probably several if they've survived prolonged trauma. Migraines, fibromyalgia, asthma, autoimmune disorders, rheumatoid arthritis, severe allergies, eczema, dysautonomia, POTS, EDS, neurologic disorders, chronic fatigue, or possibly even the highly insulting [and inaccurate] label of "conversion disorder". These are all seen to coexist alongside trauma in abundance. This list is by no means exhaustive, and - just like diagnoses for C-PTSD and dissociative disorders - many are still trying to just figure OUT what is wrong. They know they have a chronic illness, they just don't know which one, and every avenue they explore seems to point toward a dead end.
We may have a helpful answer to you. In reality, trauma affects absolutely every part of the body - especially the autonomic nervous system (which then affects everything else). This can cause all sorts of havoc and in ways we are only just beginning to more fully understand. It's been well-observed for awhile that trauma and physical illness go hand-in-hand, but it's only more recent that we've been able to see how, why, and where more specifically. Because of this, and the fact it's a very lengthy topic, we cannot recommend the book The Body Keeps the Score by Bessel van der Kolk enough. Or, at the very least, if you aren't interested in reading, maybe peruse some of his work online. It'll be something you definitely won't regret, and supplies a well-studied introduction to all the ails, aches and pains, and mysterious illnesses you or a loved one have been suffering with for what seems like forever.
Finally, in the same vein as so many of these facts but on a slightly different wavelength - traumatized children are seeing some of the most ludicrous misdiagnoses we've seen in quite some time. The lack of understanding of what children who are being actively hurt (or just recently were) are "supposed to look like" in terms of their symptoms, is staggering. Instead of traditional PTSD symptoms that we observe in adults, most kids are demonstrating all of the behavior one might expect from a child presently terrified, scared, shut down to numb, avoidant or afraid to attach, feeling under threat, trying to seek control and a voice, and who doesn't know what to do with all that adrenaline and nervous energy coursing through their tiny, terrorized little bodies. Sure, traumatized children can present in a variety of extremes, and that can be tough to distinguish at face value - but it's not too difficult to learn. And it's not acceptable to take the response of "No, no one's hurt me." as gospel in a child who's still in danger and never pursue it further - especially when all their symptoms are telling you otherwise.
Jumping to the opposition-defiant, mood-dysregulated, ADHD, autistic, etc labels/misdiagnoses can be so harmful and even lead to more abuse at home. Not to mention, they can follow them around forever, reshaping who they think they are or believe to be "wrong" with them. It can make them feel broken or defective - particularly when the treatment for these suggested conditions can make them so much worse. In reality, they are just traumatized children who did nothing wrong, but are being wronged by all the caregiving adults in their lives. They're trying to communicate their suffering to you in any way they know how, but most of those "listening" are all too eager to villainize, label, or neglect them instead. That is not helping them. We need to do better.
There are so many, many more things we all need to know and recognize about Complex PTSD, dissociative disorders, and the survivors who have them. We will absolutely be continuing this list and adding more to the conversation. What are some of YOUR greatest misconceptions about trauma disorders, or details you really wish people knew about the process of healing from them? Please share them below!
MORE RESOURCE POSTS YOU MAY FIND HELPFUL:
- Grounding 101: 101 Grounding Techniques
- Nighttime 101 and Nighttime 201: Sleep Strategies for Complex PTSD
- Imagery 101: Healing Pool and Healing Light
- Coping with Toxic/Abusive Families During the Holidays