PTSD 101: what sufferers wish you knew, and how you can help.
Lived experiences of ptsd
I have spent some time speaking with a number of people in our community about their experiences with PTSD and what they want others to know about it.
One of my interviewees experienced years of emotional trauma with family and the loss of his son, suffered severe physical injury and watched physical harm occur to his wife after a violent break in of his home.
He has suffered shame since with recurring nightmares, waking up with both himself and his bedclothes drenched in sweat, crying for no reason (that he can tell), with difficulty engaging in relationships, difficulty driving without aggression toward other drivers, difficulty leaving the house at all, and constantly intruding thoughts around safety, self worth, hope and fear whilst attempting to work to perform daily tasks.
He is emotionally exhausted, embarrassed, ashamed and has experienced suicidal events 5–6 times since the home invasion trauma.
Another was involved in a cult with her family, and suffered the many challenges that come attached to that: fear of the outside world, fears of otherness, pushing herself to extremes to fit the social requirements of the community she was isolated in; sexual trauma and pregnancy at an early age, physical trauma and relationships with parents and family that are problematic and without trust.
She then endured the emotional trauma of escaping that community, the loss of all she had known before and the struggle of attempting to acclimate to the outside world and its systems and expectations.
Whilst incredibly strong of character, has suffered a great deal, and had genuine emotional battles trying to do all she can to establish a good life for her 5 children.
Other people who I’ve been in contact with include:
- Long term disability sufferers who have been left damaged by the wider community
- Persons with mental illness who have had to try to care for equally unwell or worse off loved one
- Victims of domestic and family violence, and ongoing emotional neglect
- People who have suffered violence and derision as a result of homelessness
as well as our nurses, doctors, emergency workers and service personnel.
Sufferers tell you what it feels like
“The front door sometimes feels like a huge molten monster — If I go anywhere near it I’ll burn.”
“I have to have a war with my head whenever I want to do something”.
“I wish people knew that triggers can be highly illogical! Like a scent can be a trigger. A string of seemingly innocuous words. It doesn’t have to directly related to “the bad thing” (I.e. watching a rape scene in a movie)”
“It’s not always about the bad thing that happened. If I burst into tears because a door slammed, it’s not because someone once slammed a door, or because I think something bad is happening. It’s because my brain doesn’t have the space needed to process something happening unexpectedly because of all the energy it spends on everything else, all the time.”
“If I seem eerily calm in an emergency its not because I’m being flippant or not understanding the impact. It’s because I’m very very good at keeping myself and others safe and doing what needs to be done. Similarly, I sometimes don’t know what to do or say in situations where a friend is struggling with something my brain isn’t saying is a danger. It’s not that I don’t care, it’s just that my brain works backwards from a point my life was in danger. My brain now processes issues in response to trauma. That’s one of the reasons it looks for potential danger.”
“Sometimes when the brain needs to deal with something but it doesn’t have the stimulus to kick off the thought process, it makes one up to get the party started, and it knows the perfect ones to really get things going.”
“Not all hallucinations are hearing voices or seeing things that aren’t there. I smell things, like my mum’s perfume.”
What they miss out on, and how it hurts
From what you have seen so far, the fact that PTSD sufferers wind up excluded and isolated is no surprise.
The incredibly debilitating symptoms of PTSD not only preclude many sufferers from having social connection, recreation, time with friends and family and healthy and fulfilling hobbies and conversations, it can also diminish their ability to seek help.
Many sufferers such as those above experience anxiety about undergoing therapy, attempting to reprocess and diminish the strength of trauma, or may dread, or have paranoias about the side-effects of — partaking in a medication regimen to diminish their trigger responses.
Fear of “flying off the handle” undergoing bouts of inappropriate or uncontextualised fear or anger, and avoidance of the care provided by others in general. This further, tragically, leads into a loss of ability to enjoy or benefit from relationships for any kind.
It diminishes the benefit, or even the capacity to experience normal ranges of emotion and empathic connection.
With the constant aspect of fear from every sudden and unexpected sound, or change of plan, or sideways glance from a stranger, the simple enjoyment of everyday activities is robbed from them — driving, cleaning the car, going for a walk, public events and venues, sitting in cafes with a book, anything you can image — and this constant, rapidly shifting, high cortisol state quickly leaves the body and mind exhausted and ill.
In short, the effects of PTSD ensure that sufferers miss out on, or are excluded from just about everything.
There is no aspect of life this condition does not impact upon. It doesn’t take much to imagine, then, the incredible hurt, despair, loneliness and frustration sufferers struggle with, on top of their already loaded and burdensome moods and thoughts.
Absence from, or loss of enjoyment of family events and milestones.
Heartache around the steady disconnection of friendships.
Anguish at lashing out at people unexpectedly and then trying to explain why…
It leaves the person utterly defeated and agonised.
What you can do and how you can do it
1. Radical Acceptance
“it’s humiliating to try to explain to people why I just randomly sweat, stop talking… get up and leave. I am ashamed trying to tell people why I sometimes just don’t show up to appointments.”
It sounds stupidly simple, or perhaps even obvious, but your presence and listening without any judgement or interrogation helps infinitely more than anything else you can hope to do or offer. This acceptance and patience, whilst hard, is very possibly the most healing thing you can ever offer a sufferer. Many people can’t get this right.
2. Re-enforce their value and accept their discomfort instead of trying to fix it:
“I can’t leave my house, I terrify and exhaust my wife when I wake up screaming. I just feel like so much less of a man…”
People with PTSD are already aware of the number of people that can no longer stand to be around them who can’t cope with their symptoms and instability.
They’ve lost family, friends, jobs… and they’ve lost hope that anyone will try to understand.
As such, seeking to understand, and willingness to be uncomfortable with them is the greatest kindness you can offer.
After all, there are no magic cures for PTSD and its impacts on the brain (the best pharmacotherapy can offer is a combination of a SSRI and Benzodiazepine to make symptoms more bearable) and whilst healthy diet, exercise and meditation can slowly rebuild damaged neural tissue, this takes a LONG time with ongoing and consistent effort.
Knowing that their difficulties will be accepted, and they will be valued while they struggle, have set backs, get going again, etc. makes that long difficult journey seem far less daunting and impossible.
3. Helping them integrate their modified “normal” and encouraging them to act on the needs it presents:
“I would want someone to know that when things are bad, I’m constantly exhausted because my brain is doing a mental check of all things all the time.”
Reassure them that you understand their needs are not cowardice — they are coping with what resources and skills they have; dealing with brains that have been rewritten in any way they can.
And thats ok.
If you have enough free time:
- Offer to exercise with them, even if its just a long walk;
- Encourage them to try to maintain regular schedules, without guilting themselves when they can’t;
- Encourage them to not be embarrassed about their symptoms; they will weep in front of you for no real reason — thats ok;
- Their body may break out in incredible sweats suddenly — thats ok. They may get the shakes and need to leave suddenly — thats ok — just leave with them and show them love so that you know that have gotten somewhere safe;
- They may ask you to not follow them because it makes it worse — thats ok, just ask them very calmly to message you when they are safe at home;
- Sometimes they won’t leave the house — thats ok, just ask them to send a text when they feel more stable.
The more ‘accepted’ their needs become, the more they gain control over them, and a semblance of normal life can become available to them.
Reflex Social Services is an Australian nonprofit charity that delivers mental and social health services to people in need throughout Newcastle, the Central Coast and the Hunter Valley.
This publication, Flex-Ed, is a resource for the latest in mental and social health research and development.
You can find out more about us by visiting reflex.org.au, visiting us on Facebook, Twitter, and Instagram.
