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Archive for the ‘Parents/carers’ Category

The Dirty Laundry Project (DLP)

Dirty Laundry ProjectAt the DLP we celebrate, recognize & honor those whose actions are breaking the eating disorders & mental health “Stigma wall.”

Beating Eating Disorders (BED)

There is so much more to eating disorders than the way someone looks.
Eating disorders are a seBeating Eating Disordersrious mental illness. This disease affects millions of people all over, and has the highest mortality rate of mental illness. Often times, people with eating disorders are afraid of being judged due to the stigmatism and for that reason keep it a secret. Would you keep the diagnosis of cancer a secret? NO!!! This mental illness deserves the same kind of attention and respect as every other medical/mental diagnosis.

Eating Disorder Parent Support (EDPS)

Eating Disorder Parent SupportEating Disorder Parent Support (EDPS) is specifically and only for adults who care, or have cared for a loved one with an eating disorder. We are here for peer-to-peer sharing, support, education, guidance, encouragement, and to offer HOPE as we support our loved ones toward recovery. We welcome parents, spouses, and adult siblings, who are involved in the care; however, we are not a site or a support network for sufferers themselves.

Website: http://eatingdisorderparentsupport.weebly.com/
Facebook: https://www.facebook.com/groups/EatingDisorderParentSupport.E/

International Eating Disorder Action (IEDAction)

International Eating Disorder ActionInternational Eating Disorder Action is a coalition of parents, carers, survivors, sufferers and others, established so that members can take ACTION on issues relating to Eating Disorders (EDs).   We have members in over 15 countries and address issues globally.

Our goals:  1) to increase awareness and knowledge of EDs as treatable, biological, brain-based illnesses that that are neither the fault of, or chosen by sufferers, nor caused by parents; 2) to advocate for national Eating Disorder strategies and treatment systems that use evidence-based services; 3) to demand legislation and funding parity; and 4) to address groups/companies overtly or inadvertently fuelling Eating Disorders by glamorizing them or profiting from them.

Website: http://iedaction.weebly.com/
Blog: http://internationaleatingdisorderadvocacy.blogspot.com.au/
Facebook: https://www.facebook.com/groups/IEDAction/

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(… or reflections on our anorexia journey)

The uni break went so quick. One minute she is home, next minute gone. lol, well almost. She went back earlier, so excited for the new unit, then realised she was back way too early and desperately homesick this time. She came back home, instead of toughing it out. She said she had a much better chance of not falling into depression or anxiety by coming back home. As always I observe everything she says and does. Sophie’s maturity surprises me to the level she has achieved (within a mere several months), her insight and empathy (so apparently missing) is finally blossoming. Doesn’t mean she was always calm and not hysterical at times, but a definite switch. Before she went back, the aspie side of Sophie was all organised. Doctor appointments made, counselling appt made, new referral appt with ED specialist made, classes sorted, disability needs sorted. She just ploughed through it all. This is the plus side of having aspergers.

The new ED specialist is more of a counsellor but has the insight and understanding of what having an eating disorder in your past means for you presently and how you relate and cope with life. Whilst Sophie has to travel to this centre, I am pleased she has taken this on board as an extra coping and learning tool.

It is also time to start weaning her anti-depressant medication. Five years is a long time to be on the medication, and now is the time to slowly (painfully slowly) wean her off and see how she responds.

For me it’s been a time of great reflection. 5.5 years into this, 5 years from diagnosis, 3.5 years from full weight stabilisation, 1-1.5 years with no anorexia behaviour or thoughts. It’s been an amazing ride, that only those who have been here know how crazy, mixed up, painful, the intense highs and the intense lows. Moving from small picture, every moment, every day stuff to big picture stuff that encompasses months. Being part of a new parent support group too, has been part of this reflection. I have had to think back to the very beginning, remember things I thought I had put away forever. It’s actually been a painful journey for me, but it has honed my thoughts and beliefs about eating disorders and taught me to be far more articulate and to advocate on a higher level.

Thought I would put together a summary – seems a timely thing really.

our anorexia journey

Biggest Mistake
* under estimating how long, painful and soul destroying this journey is
* feeling guilty that I had somehow caused this

Biggest Misunderstanding
* that we could get through this in a couple of months – not years

Biggest Regret
* not demanding more from the health system around us or challenging the wrong beliefs at the time

Biggest Fear
* wondering if at times I could continue to care for her
* her dying before we could turn this around into recovery

Biggest Lesson
* how quickly you go from health to critical and in a hospital bed
* how you can never never negotiate with an eating disorder
* your child is totally separate to the eating disorder behaviour
* comorbid illness are a part of eating disorders and make the struggle to recover harder and can become a part of life afterwards

Biggest Myth
* you don’t have to be skeletal to have anorexia
* relapse is a valid and normal part of recovery not something dangerous, fearful or not normal
* tube feeding is not a shame or psychological issue. Not now. Older women struggle with this and parents have their own hangups about this. The reality is very different for those in their teens who are tubed fed.

Biggest Support
* those I met going through this journey who were travelling it too
* having an amazing, strong, recovery focused team of five professionals

Biggest Surprise
* the inner eating disorder voice in my daughter’s mind. Like getting to know the devil himself.

Biggest Problem
* health professionals who still do not know how to diagnose or treat eating disorders
* the lack of resources (both money and treatment) for parents and sufferers to access to get treatment and recover.
* the different approach, government understanding and health systems in each country that actually hamper treatment when the illness itself is the same regardless of country.

What I did Right
* early detection, early intervention
* standing with her despite the horrors of the illness and behaviour and walking with her to recovery

What Benefits Did We Gain
* obviously my daughter’s life and health but also gaining a deep, close and open relationship with my daughter
* gaining some wonderful new friends who truly understood and still stand by us
* an intimate and highly experienced understanding and knowledge of eating disorders that we can share with others

What Did We Lose
* the years my daughter cannot get back of her normal growing up time with her peers
* friends

Before Anorexia
* my daughter was anxious, highly strung, a perfectionist, a misunderstood kid with her peers
* I thought I had a plan mapped out for some kind of normal existence like every other family raising teenage kids
* I thought I was already a strong mum because of domestic violence.

After Anorexia
* my daughter knows herself so well compared to other kids her age. Whilst this is a plus it is also a negative, as she struggles to find a close friend
* I learned I am stronger than I thought, I learned a deeper side of me, and I learned the dreams I had no longer ‘do it for me’. I search deeper.
* I am still finding who I am now, I no longer want the same dreams. I still struggle to find my way around a kitchen after so many years tied to anorexia cooking and preparation.

The Blog Role
* ended up being far more than I ever thought, and gained me so much privilege to talk to others on all levels in this journey. Thank you!

What would I do Differently
This is very personal. It would be to leave our dysfunctional family domestic violent life instead of waiting til further into recovery. I had planned to leave just before my daughter started down the slippery slope. I thought (wrongly) that staying might have been better for her health. It would have given full FBT a better chance and a safe environment that had no anger, expectations, eggshells etc in it.

Family Based Therapy
That eating disorder recovery is NOT a one-size fits all. Despite the best statistics, FBT (Maudsley, FEAST, FBT types) don’t always work for some families. This is not a point to be guilty about or feel like you have failed. It just is. Means you just go and find what does work for your family and how to care. As long as there is forward progress into recovery then you are going great with whatever you are doing.

Families are not to blame
I will keep saying this shouting it from everywhere. Eating disorders are genetic based. Families do not cause eating disorder and are not to blame for an ED developing.

Overall
My faith took a pounding, became far more realistic and more honest. Like David I adore but I will question and ask.

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Laura Collins, author of Eating With Your Anorexic, interviews experts in anorexia and bulimia and other eating disorders about what role parents play in causing eating disorders.

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This come courtesy from Weightless. It is good advice all round – regardless of what illness or pain we have in the household and how to cherish each other and our relationships.

Be someone's safe placeListen to your loved one without judging or criticizing them.

Listen without fiddling with your phone.

Listen without interrupting.

Be curious. Don’t jump to conclusions, and assume you know what they’re going to say or why they feel the way they feel. Ask open-ended questions.

Don’t bash others’ bodies or your own in front of your loved ones.

Don’t make negative comments about their body.

Don’t make comments about the calories in their food or how much they’re eating (e.g., “Wow, you can really put ‘em away!” “Are you sure you want that second helping?”)

Avoid saying “You’ve lost weight! You look great!” We never know why someone might’ve lost weight. They might’ve been terribly sick or stressed out. They might’ve just stopped a restrictive diet. They might have an unhealthy relationship with food. In other words, we just never know. It also makes people wonder, “did I look bad before?” Either way, it can be potentially upsetting or triggering for someone.

Respect their boundaries. Let them decline invitations they’re not interested in. Give them the space to say no to extra commitments. If they’re not ready to reveal what’s bothering them, try to respect that, too.

Hug them.

Hold their hand.

Tell them you love them.

Tell them why you love them.

If you feel comfortable, be vulnerable with them.

Keep their secrets secret.

If you find yourself getting angry, take a break. Take a breather. No one feels safe opening up to someone who’s boiling over and yelling.

Validate their feelings. Let them feel what they’re feeling. They’re not wrong, weak or selfish for having those feelings. Again, get curious.

Why are you feeling this way? What happened? Help me understand how you’re feeling.

Ask how you can help: What can I do for you? How can I help you with this? What do you need? Ask this regularly.

Ask them directly about safety and self-care: How do you feel safe? How can I help you to feel safe? To take kinder care of yourself? To feel the way you’d like to feel?

Of course, we may try our best to create a safe space for our loved ones, and we may mess up, because, well, we’re human. These are just suggestions and reminders that we can do many things to help others feel safe, too. When we inevitably make a mistake, we can be honest, we can apologize, and we can keep trying.

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People tend to think that all is well from their external observation, Sophie is in recovery and life is moving forward rather than backwards. A very easy assumption to make, after all she has been in a good stage of recovery for sometime now, so of course you should have all moved on.

Wrong.Families in mental health recovery

Sophie is still dealing with the legacy of having anorexia. The dreams, sudden fears and panic attacks of slipping backward, the literal distance between her and me and being unable to cope on her own at times. She still doesn’t know how to talk to someone else outside of the family and therapy people about her illness. She fears that knowledge in the hands of others will mark her out as ‘always the anorexic’. She is still finding it overwhelming dealing with feelings and emotions after being numb for so long. It literally floors her until she can find the path through all the emotional forest to the other side.

Her brothers still have questions, and have had their own therapy sessions this year in talking about how ti was for them. Again they don’t want to talk to anyone other than a qualified therapist. It is all too hard, and they find no one else barely understands what it was like for them. As for Will, I cannot even begin to express where he is just now.

As for me, the mum, in all this, I too am on the recovery road still from the anorexia. It sill brings fears when I hear Sophie say certain things or do certain things. Fear that she may be slipping, or her mind is still doing un-conscience ED behaviours. I still find myself feeding her more than she needs. I still remember too closely the feelings, fears and awfulness of that whole time. As much as I am moving away and stepping into a new life, the past is still there. And as any mum/parent is aware, the thought and knowledge that this can all happen again – very easily. I too still use therapy as I reach each next stage of recovery to point to the next stage and steps. This is where my faith steps in and holds me strong. Without God I could not let Sophie go as easily as I have and live her own life in a different city. I trust Him with her safety and her recovery.

It takes a long time to develop an eating disorder, it takes even long to recover. It is never just the suffer who experiences this, but the family, loved ones around them. There is no timeline for ‘being recovered’ for anyone involved. As humans, there is grief, guilt, change, relationships and trauma (all part of the anorexia experience)  that have to be travelled and sorted before we can smile again at the future. Be gentle with us who are in recovery. Don’t expect too much, or expect us to bare our souls to you. It takes time.

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“Learn to separate yourself from the eating disorder”

Heard that yet from your therapist? If you are in very early recovery you are not going to understand what they mean. You and the eating disorder are still very much one unit. Are psychiatrist used this image to help Sophie understand.

  • Cover one hand with the other: that’s you and the eating disorder at the beginning. The ED is totally controlling you.
  • Then slowly, gradually start to move the hands apart: As you recover and learn more, you can start to see two separate entities, yourself and the ED.
  • Finally, your two hands are far apart: you are no longer controlled by the ED, you are your own person.

Both carers and sufferers must learn this separation technique. It is critical for recovery. It removes the blame and the idea the person is the problem. It shows that the eating disorder is a separate voice and thinking pattern to you. The eating disorder is the problem, never ever the person.

One of the best ways of becoming aware of the ED and how it is separate to you, is to learn to externalise the eating disorder. Like it is a separate being. It also empowers you to be able to make positive changes and think encouraging thoughts. It disempowers the eating disorder and the control is has on your life.

1. Give it a name

This may sound weird, but it does work. Give the ED a name. Ana, Mia, Ed, anything. This makes the illness separate to you. You address the illness. You see it as a separate entity to yourself. This gives some distance and makes the illness objective rather than personal.

2. You are not a label (or a victim)

Don’t call yourself or others the ‘anorexic’ or  the ‘bulimic’. Doing this ignores the sufferer as a person. They become a label or statistic. You are a person with a mental health illness called anorexia. All the things that made you unique as a person before this illness are still there and still real. The idea that you are a victim, also removes your power as a person. The word makes you feel you are unable to take control of your own life.

3. You still have a voice

It’s just silenced. That’s what the ED does. Learning to exercise your voice and make it strong again, gives you back the control. Just because all you hear at the moment is the loud, negative and destructive ED voice, that that is all there is. Your voice is still there, underneath, and can be developed to be stronger than the ED voice.

4. Make third party statements

When you don’t eat your scheduled meals, or you choose ED behaviour ask questions that don’t point the finger at you.

  • How did the eating disorder make you skip lunch?
  • What did Ana tell you today about yourself?
  • That’s the eating disorder voice I hear, what does (your name) think or feel?
  • Who made that statement, you or Ana?

5. Notice your vulnerable triggers and times

Eating disorders use certain ‘weak’ points, situations, times of the day, certain people to trip you up. ED behaviour and slip-ups are always stronger at these times. Being aware and forewarned can help you beat the ED at it’s own game.

6. Don’t beat yourself up

When you find it too exhausting or too hard to separate from the ED and you just let the ED do it’s thing, be gentle on yourself. It takes a lot of time and learning to get the separation/externalisation happening. You have lived for so long with the ED being often the only voice in your head. Your own voice is rusty from dis-use and like any unused item, takes a while to work.

7. Believe

Yes, externalising the ED is possible. It is a real thing and can happen for anyone and everyone. But it’s not a magic pill or wand. It needs commitment and skills but achieving this is a major step forward in recovery. It opens your eyes to the real character of the eating disorder and it shows you the beauty of your own voice. Therapy with a skilled professional really helps with learning this process.

 

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I am ignoring youIt’s a busy world. We all have deadlines, people to see, things to do. We have competing multiple tasks for our time. Email, phone, face-to-face mean we are in communication all the time. It also means as professionals in the medical world you are required to treat all communication at the same level, ie. email is just as important as phone or face-to-face time.

If a medical professional says “email me and I will respond”, or “you can contact me anytime by these methods”, you take them at face value. It means basically a handshake. They have given their word that they are available and will respond when you contact them.

Living an eating disorder, whether sufferer or carer, means you need to be able to contact someone to make or change appointments, crisis management, information etc. Often you find you need answers long before you next appointment, that’s if you have another one set up.

Imagine then what it is like for us, when there is no answer. When you don’t email back, you don’t return phone calls. It’s not like eating disorders are an illness that everyone knows about. We cannot just ring anyone else and get the answer we need. Specialised eating disorder professionals are very thin on the ground and we don’t have choices. It feels like you are in a void, no one is talking to you, you don’t know what to do, you don’t know where to go. In front of you your loved one is having a crisis (or you are yourself) and you can’t get answers or even manage to book an appointment.

We know you are professional medical people and for some reason that puts you above us the ordinary people. But not responding when you say you will, means you are not professional at all. Treat us with respect, care and integrity please. We do not have the answers we need, you do, and we require those answers for very real life illness/caring situations. You add to our stress, frustration, confusion, loneliness and sense of worth when you ignore us.

When eating disorders first strick, it is a very scary and confusing time for the family. We need support, we need answers, we need to not feel cut off from the medical establishment that offered to be there for us.

We wonder just how sick or messed up our lives have to be before you decide to respond to our communications.

So please, spare a thought for the person whose email you just ignored, the phone call you didn’t have time to respond to. We contact you because you said we could. We contact you because we need support and answers.

 

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