PTSD and caregiving

Having an ill child is scary. When the diagnosis is serious, the fear can be not only overwhelming but make us sick. It is no surprise to me that in reading PTSD shows up in parents of kids with cancer I read the exact symptoms I hear about and observe in parents caring for loved ones with eating disorders and remember experiencing myself: "intense fear, helplessness or horror; recurrent nightmares and flashbacks; irritability, anger outbursts, heightened startle response; and avoidance of events, people or places." Every single one. And more. Most interesting is the fact that these symptoms almost always seem to start just when things are getting better for the patient - which I have always interpreted to mean that parents instinctively do what they have to do and save their falling apart for when there is an opportunity to do so.

I also think parents of ED patients have a double problem in that society rarely understands or appreciates what a parent needs to do to be the best caregiver during ED recovery. We suffer in silence and often with stigma over our heads - and instead of being seen as having come through a crisis we're simply offered a place back at the table of normal. And we aren't. No parent who has seen a potentially deadly illness in their child is completely normal again: cancer, injury, mental illness, it doesn't matter. A grave threat averted isn't something you forget.

Interesting that the coping tips in that article are exactly what I might want to tell ED parents, too - but these are not the typical mood or content of advice to parents of ED patients. Usually, the advice is all about fixing yourself, backing off, all the things you should not have done and should not now be doing. Maybe because I do see eating disorders as a life-threatening, treatable, genuine illness I find the following to be right on the mark.

Coping tips for parents

-- Focus on today and not the future, and on what you can control versus what you cannot.
-- Recognize depression triggers: anniversaries of a diagnosis, your child's birthday or doctor appointments.
-- When seeking support, differentiate between those who give it and those who drain your energy.
-- Reach out to other parents who have a child with a similar diagnosis.
-- Get involved in an advocacy group for your child's disease.
-- Set up a website, with an organization such as, so that you can control information about your child's health.


  1. I agree with everything you write here Laura... It is only during the last 2 years that my mother and I have been able to talk about my AN. For many years she couldn't watch anything on TV about AN and she'd 'clam up' if her friends asked after me. I knew she had always felt terribly 'guilty' about my AN, wondering what she could possibly have 'done wrong', or where she 'went wrong' with me.

    The truth of the matter is that she never did anything wrong. I can see nothing that she did wrong, even mistakenly. And actually, I also held a lot of guilt, for many years, thinking I must have been a terrible person to have caused my patients so much anguish. I now know that I was not to blame either. I certainly didn't choose to have AN, yet AN so often gives the impression of being wilful behaviour.

    I can understand why my mother has PTSD in relation to my history of AN. I did some pretty awful things to myself while trapped in AN which she witnessed. And now I also have some idea of how she felt seeing me looking emaciated, yet still unable to eat...

    When my father died of cancer last October he weighed 95 pounds. He lost over 100 pounds during the 14 months he was ill. I watched him waste away and I felt helpless when he refused food. But his pain medication restricted his appetite and he had frequent nausea. I have PTSD attacks in relation to his illness, which I imagine are similar to the experiences my mother has had in relation to my AN in the past.

  2. Laura and may I add to your list for parents:

    Get enough sleep
    Eat your own healthy balanced diet
    Take care of your own health problems
    Get a bit of exercise every day-preferably outside
    Learn to find a little happiness in every day, even if it is just for a minute or two
    Think about some vitamins for yourself, vitamin D, fish oil, a sun lamp in the winter. This is physically and emotionally hard work-give yourself an edge!
    Also, whatever you do, try to avoid going through menopause when ed strikes your loved one!


  3. I too enjoy your thoughts, Laura, but found this entry both timely and extremely significant. I also found myself nodding my head while reading the second paragraph. Family and friends don't know how incredibly, incredibly hard it is to do this (of course, it is absolutely worth it). This crisis is not viewed as one by others, wrongly and unfortunately. As always, thanks for all you do!

  4. This has come at a good time for me too. My sister in law has been reading the Brave Girl Eating serialisation in the Telegraph. She asked me if I had read it and I explained that I found it hard to read because it was our experience. The treatment was basically the same - 6 times a day, food, no matter what the anorexia threw at us for 15 months.

    She was amazed and I began to see a glimmer of admiration in her eyes. She lives a mile away from me and her husband was here more or less every single day during refeeding.
    She finally understands what we went through and is beginning to share this with other people.


  5. The other thing with ed is it can be like stop loss - you have a crisis plough through start to feel the trauma and stress and bang before you have worked through it you can be back on the front line again fighting a relapse or a remission, or responding to some behavior that suddenly rears its head and the adrenalin rushes again. So the 'Post' part of post trauma can be unclear and sometimes is never resolved over a long period. This can really wear carers down. In this context daily self care is really important as Raye-Ann alludes to. Cos you can;t afford to say 'I'll deal with this when she/he is recovered.' As there is no clear timeframe for recovery.
    For me having a daughter that appears recovered but has a lot of brain healing to go makes it very difficult. People think we are through it, post the trauma but we are still in the thick of it. So the stress and trauma can remain unresolved and unacknowledged like disenfranchised grief in me, and I have to work very hard to keep my equilibrium.

  6. is it common for the caretakers of those with eating disorders to develop a sort of ptsd towards the ED itself and towards the person in a way as a result? If so, is there a support program for those who have been traumatized as a result of caring for someone with an ED.


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