I’ve seen a number of great lists floating around the internet about what people with PTSD wish the people around them understood, so I thought I’d create my own version. From my perspective after 8 years of recovery, these are the things I wish people understood. Enjoy!
1. PTSD is as real as any physical wound.
When I say I have PTSD it means I’ve been badly injured in some manner – psychically (to the psyche or mind), emotionally and sometimes physically as well. Another analogy is if I was a house, PTSD is as real as the house being burned down or having a tree fall on it. I’ve been damaged. I’m recuperating.
2. I can’t just let it go.
Thinking it’s possible to let it go is the equivalent of a nurse in the ER receiving someone with a huge gash in their arm and saying, “I’d recommend you just let it go.” The person can’t. I can’t let go of the injury, all the effects of the injury, and the need to integrate afterwards. I can let go of things like cognitive distortions like “horribilization” and “musterbation” and negativity, for example, if I go to SMART Recovery and learn rational thinking. At some point in the future, if I make a lot of progress in my efforts to recover, the diagnosis from 2010 may not be accurate anymore and I may want to let go of the label or ego identification or whatever attachment I may have formed to the diagnosis of PTSD. There may be some self-limiting beliefs I can identify and let go of as I go through the process of recovery. But essentially PTSD is not something I can let go of no matter how hard I try.
PTSD is not something I can let go of no matter how hard I try – I have to face the symptoms, work with the terror in my body, work my way out of fight/flight/freeze reactivity, rage, violence, addictions, suicidalness, hypervigilance, mental chaos, lack of trust and other difficulties with relationships – that’s something I have to walk through.
3. I’m deeply exhausted all the time.
I’m exhausted because my energy is drained due to my nervous system being overwhelmed with stress. On top of that I expend energy by putting a lot of effort into recovering from a level if disintegration I can’t handle.
When I say “I’m tired,” what I mean is,”I am being pulled under quicksand by something that is the weight of ten elephants.”
4. I am not lazy; I’m processing.
When I drag around or sleep too much this is due to processing – psychological and physical processing – that never finds resolution. When I did not have PTSD, sleeping returned my body’s physiology and my mind to a normal reintegrated state.
Now, no matter how much I rest, my body never can emerge from the stress.
When I sleep I sink into a deep internal struggle to integrate a vast sea of scattered pieces.
It feels like standing at the bottom of a huge wall of stress, disintegration and confusion. If you can get to the top, you can have energy. But you’re too weak. The wall falls and crushes you and you have to rest because you need to try again soon. I personally believe that therapy will help me eventually integrate and then rest will hopefully be recuperative again.
5. My body feels like a battleground.
I vaguely remember a time I just got up, went to work, came home, watched Netflix. Yeah… now it’s not like that anymore. There is a lot of fight, flight, freeze going on which makes my body altogether a different place to live now.
6. I’m not “crazy” when I am triggered.
If there was just one thing I wish organizations and professionals (such as doctors, dentists) understood about trauma it would be how triggers work. Getting triggered by something is an involuntary response. While triggered a person has difficulty staying in touch with present reality and is experiencing a nervous system response based on the past. Someone who is triggered is here mentally but their body is in the past. Sometimes they are momentarily engulfed by the past altogether. If someone is triggered at your organization or practice, just having the understanding that this is their nervous system in action and they are not crazy is amazingly helpful.
7. My heart hurts.
My heart hurts because – most trauma victims (especially of childhood trauma) have been betrayed and had their heart, the heart of their being, violated, crushed, strewn in the dirt, or broken in some way.
see article: Trauma: The Heart of the Matter
8. I relate to Time differently than I did before.
Time has no meaning anymore. It is difficult for me to operate on a schedule, but I try my best.
9. There are extreme, moment to moment, ups and downs.
If I say a bunch of things that don’t make sense and sound a little crazy or child-like, that doesn’t mean I’m always going to seem “crazy.” The next day I could be more intelligent and more myself. If I sound intelligent right now, that doesn’t mean the next day I won’t be a zombie or a basket case. My mind is recovering from serious injuries, so have patience. And please have compassion.
My mind is recovering from serious injuries, so have patience. And please have compassion.
10. PTSD is designed in some ways to get worse.
Based on things I’ve read and my own experience, my opinion is that the way PTSD is set up in the brain means the brain is wired for fear to generate more fear and in turn generate more fear. This is a feedback loop that leads to a downward spiral. I previously identified 7 feedback loops but there are more than 7; I have compiled a list of 7 more for a total of 14 (I’m working on a post about this). All of these feedback loops are ways that symptoms have inbuilt characteristics that make them tend to stagnate or to get worse. Social isolation is one symptom that can cause a lot of other symptoms to get worse. Also, anytime a person gets into a situation that constantly reinforces their trauma based reality, symptoms can get worse, and people are prone to get into situations they are familiar with and repeat the past. This is why treatment is so important. It takes conscious effort to go in a positive direction and not stay within the feedback loops or slip backwards. Having said that, I still think PTSD is something that can be overcome; that’s what keeps me going.
11. Time does not heal all wounds.
With PTSD time heals some wounds, and treatment and effort heal others. And as I just mentioned some get worse with time.
12. Some symptoms do seem to go away on their own.
While there are mechanisms in the brain that seem wired to continue to generate more and more anxiety, there are other mechanisms that seem to naturally get better. As the trauma recedes into the past the most extreme symptoms, I believe, naturally have a tendency to flare up less and less frequently. For example, I had flashbacks for the first 3 years and for the last 5 I have been struggling with triggers but no flashbacks. Actually, the way my particular system reacted, I only had a few actual flashbacks in which I was back experiencing the trauma. My sense of this was that they went away on their own as my brain integrated by itself, but it could have been due to starting Somatic Experiencing therapy.
I had an extreme startle response and I have a less extreme startle response now. My hypervigilance was really high from 2007-2013; in the last two years it’s gone down and I don’t unconsciously scan so much for danger. In the last two years my perception of reality has improved from seeing through eyes of “shock” and isolation to feeling somewhat more connected to the world around me. I think this just happened on its own but I don’t know for sure. Yesterday I noticed something that used to trigger me is no longer a trigger. While I’m just as prone to bouts of feeling suicidal as I was right after the events, in the last 9 months it has only been half the time due to being triggered and overwhelmed with terror and wanting to give up and escape triggers, and the rest of the time it’s been due to the kind of irrational thinking patterns I was working on in SMART Recovery prior to getting PTSD (and therefore more related to the medium level depression I have always had my entire life).
It’s wonderful to notice when parts of me have healed and integrated possibly on their own, just due to my own body’s innate healing capacities. However, I think much of what improves is because of my own efforts to push myself to improve.
It would take a more extensive investigation to understand what parts of the brain get wired to go into downward spirals, and which parts have natural healing and integrative functions.
13. I didn’t develop PTSD because I’m weak.
PTSD is an injury that can happen to the strongest of the strong. There is a greater chance of a person developing PTSD if they have endured childhood trauma. Still, this does not mean they as a person are weak; it means they have been weakened by previous injuries.
PTSD is an injury that can happen to the strongest of the strong.
14. PTSD is an injury that may lead to an illness.
In my opinion, PTSD is the result of overwhelming psychological injury to a relatively healthy person. This injury results in mental and emotional impairments. If there were previous traumas the person is more vulnerable. If there were so many traumas that the system cannot process all of the ramifications, these impairments can develop into a chronic mental illness that has certain characteristics – so the PTSI (Post Traumatic Stress Injury) may develop into PTSD (Post Traumatic Stress Disorder). Just as, if someone with a wound had so many complications and infections resulting from the wound, the infections spread to their heart weakening the heart, then caused a weakening of the immune system maybe that person would develop some diseases like heart disease or gangrene or chronic inflammation or autoimmunity. It started with an injury but now has progressed into an illness.
15. PTSD is generally a huge struggle. I have to be strong every day.
Sometimes what used to be a routine task is now like running a marathon, every moment a colossal effort to get the energy necessary to do it. I have to be strong to keep plowing through every day, to keep finding different treatments, to keep going when feeling hopeless, to find the will to live when I lose it temporarily.
Essentially, I have to be strong enough to still believe in life when I feel dead and to keep on pursuing life even when my mind feels shattered and broken.
16. Self-intervention is a necessary part of integrating after trauma.
I have had to learn techniques to resurrect myself over and over again – to get my mind out of certain states, to self-calm, to regulate. Sometimes the techniques work, sometimes they don’t and sometimes I forget to do them.
17. PTSD has helped me develop certain positive parts of myself; I find Post Traumatic Growth to be real (even though it’s difficult to perceive).
PTSD has forced me to develop some of my strong traits, most notably persistence, compassion, inner exploration, humbleness and knowledge about psychology and about myself. Once when I was younger a man collapsed in a train station. I let the attendant handle it. Now, I would be all over that – asking him if he’s OK, making sure the attendant calls 911. My natural, non-manufactured compassion for others’ pain has increased by probably 20x. The only exception is if I’m really numbed out emotionally due to the PTSD, or in a suicidal place or something, then maybe it would take a little time for the compassion to kick in.
PTSD has forced me to develop some of my strong traits, most notably persistence, compassion, inner exploration, humbleness and knowledge about psychology and about myself.
18. Just because PTSD has helped me develop certain positive parts of myself doesn’t mean it is positive.
My estimate is that I am experiencing 85% Post Traumatic Stress and 15% Post Traumatic Growth. While PTSD has forced me to strengthen certain positive traits, it is essentially destructive and has weakened me so that I’m much weaker than I was, as a wandering faceless ghost is weaker than a human with an intact form and identity. Also, what happened was not “meant to be.” It was an unfortunate turn of events, in no way the most healthy pathway. There are injuries to my mind that may never heal. There are real impairments to my ability to function in the world. The negative results are like 85% with 15% positive things like growth, learning and development of strengths (I’m being pretty generous it could be less). In this regard, I could be considered to be experiencing 85% Post Traumatic Stress and 15% Post Traumatic Growth.
19. What doesn’t kill you makes you weaker and stronger. But mostly weaker.
I like this image because it looks like an intense struggle to conjure up inner strengths in the midst of a kind of painful and dark and alone place – there’s strength but it’s not without a cost of some kind.
The image above is from the nonprofit Women with PTSD United – here are links to Women with PTSD United website, Facebook Page, Facebook Support Group (by the way, the website has a great collection of downloadable worksheets for recovery)
20. PTSD is paradoxical in how it makes me a bigger more confident person afraid of everything.
For example, I have fewer petty concerns after surviving and simply being grateful to be alive (appearance, for example, of people doesn’t matter it matters that they live) while at the same time every sound and noise makes me frightened (so I seem concerned with small things because I’m constantly triggered by stuff). Also, I have less fear due to facing and surviving something so scary (so I can face anything now!), but at the same time I have many more fears of little things that happen during the day (I can’t handle a scent in the air! I can’t handle a sound!).
21. PTSD is my injury not my identity.
It helps me when both the reality of my injury and “who I am” as an individual human being are acknowledged.
22. PTSD doesn’t define me, but I may not remember who I am temporarily. PTSD can involve a lost sense of self.
In some ways the person I was before died. I believe some aspects of them are still somewhere though, like behind a door I lost the key to. Right now I don’t have much access to them and therefore I feel “blank,” which makes it feel like I am PTSD. Right after the traumas I had no access to them at all, and now 8 years later I am experiencing little bits of memories and tiny senses of that person I used to be come up now and then.
I have to keep the faith that there are aspects of me – myself, my identity – that still exist and can emerge little by little as I diligently go to treatment and work on myself. I have to trust that I actually am a whole, unique person but I don’t feel or embody or experience that person anymore.
Lack of sense of self can lead to amplified, overwhelming emotions. I think it’s important to note here that because of the loss of integrity of my sense of self, I also experience fragmented and lost boundaries – like I have no edges. This means that all other emotional experiences outside of PTSD, such as emotional experiences in relationships and grieving losses, are greatly amplified. This is because I am not experiencing myself as a separate and whole identity anymore that can let things slide off my edges, like a duck lets water slide off it’s feathers. I’m more like a boat with many holes that lets all the water in. I may be numbed out sometimes to cope, but in other ways I overreact emotionally to things. These emotions may not be directly related to PTSD but the huge amplification of them that causes me to be completely overwhelmed by them is due to the PTSD.
When I integrate my experiences I can only hope that I will become myself – a new myself.
23. I was a different person once upon a time. To heal I will need to learn how to accept who I have become.
Yup, if you look at me now, you are seeing Version 2. Version 1 was somewhat different. I had C-PTSD already so I had some trauma reactions like low self-esteem, confusion and difficulties with socializing but when I got PTSD something major happened to my brain. Version 2 is much more disintegrated, more out to lunch, deer in the headlights, scatterbrained, confused, amnesic, extremely tired, afraid of a million things (triggers), incapacitated by fear at times, deeply depressed and suicidal at times and more easily enraged. Also has a terrible memory. Sometimes I wish that people could meet the person I was before; I wish I could just whip her out of my bag and say “Look! This was me!!” Lately though I have been noticing with sadness the huge resistance I have to surrendering to my present self. I guess I’m hoping that someday I can learn to appreciate, rather than be horrified by and reject, the person I have become. After all, for a faceless ghost she is very strong in certain ways.
I’m hoping that someday I can learn to appreciate, rather than be horrified by and reject, the person I have become.
This is an excellent article: 10 Tips for Understanding Someone with PTSD
Also, this list is very good:
List from PTSD SUPPORT AND RECOVERY:
“Things People with PTSD Would Like You To Know”
- PTSD can happen to anybody
- We can’t just “let it go.”
- We find it hard to trust people
- We didn’t ask for PTSD and we are trying our best
- It affects the entire family
- It causes a physiological change in our brains
- We sometimes need to isolate
- Every day is a struggle
- Any traumatic event can cause PTSD
- It’s not our fault
- It’s exhausting
- We often feel small, insignificant or invisible
- It’s overwhelming and lonely
- It doesn’t define us
- It isn’t in my past, it’s in my everyday”
Heidi Hanson is an artist and writer in Asheville, North Carolina currently working on an illustrated book chronicling her journey healing from Post Traumatic Stress Disorder.