Thursday, August 11, 2011

Just Tell Her To Stop: Family Stories of Eating Disorders Chapter 4

Many of you have been asking when the e-book version of Just Tell Her To Stop will be available.  Any day is what a thought a while back.  So for now here is a chapter I think will be helpful to some of you trying to take care of yourselves and your ill loved one at the same time. 
I'd love to hear your comments.  And, I'll keep you posted on when the e-book is out.
Until then, may you find joy and hope in your journey. Becky

Chapter 4
Yes, It Affects the Parents’ Marriage
Walking up to Chris at a coffee shop, I was a bit surprised to see how composed she appeared. She had shared briefly on the phone about the many trials she was facing in addition to her daughter Mary's eating disorder.
Occasionally, her coral-colored lips quivered as she spoke, but her calm, matter-of-fact manner was almost unnerving as she casually spoke of circumstances most of us could barely comprehend. Only sporadically did a tear or two escape from her tired eyes, one of the few giveaways of the toll being taken on her life.
She currently lives with her own health issues as well as the constant worry that her daughter will die from her eating disorder. This is her greatest fear.
I kept having to manage the thoughts going on in my head while interviewing her: How can she be so conversant? A person walking by would never suspect the stress this woman is under. Why do we feel such an intense need to hold it together when our lives are falling apart?  Is there so much stigma attached to eating disorders we can’t let others know about the extreme pain we are in?
It is amazing how we are sometimes able to keep our outer shells so put together when our hearts are breaking. We all do the best we can to manage the blows that life throws at us and Chris was doing a beautiful job of holding it together even though no one had guided her in the essential skills needed to help herself or her daughter. 
In a closer-to-perfect world, a parent with a seriously ill child would not face additional challenges. But they do continue and we are not handed just one challenge at a time; too often the challenges snowball. A lot of people lose their jobs, friends and family members die, car crashes happen. Even minor mishaps like the furnace breaking down can easily overwhelm us in a time of crisis. Soon the shoulders start to slump and our heads duck as we anticipate the next drama, the next upheaval.
Chris' story may be a useful tool for family members to share with friends or family who want to be supportive but are having trouble grasping the formidable challenges that exist during this illness. 

Chris' Story
One of my biggest frustrations is that I know my daughter Mary’s eating disorder is much more serious than my husband Tom thinks it is. Hearing Becky say that she hears this often when speaking to mothers instantly reduced my feelings of isolation. Even though I know men and women experience trauma differently, it has been lonely not having Tom acknowledge the seriousness of her situation. Seeing Mary lose interest in her friends, school, hobbies, and activities has been like watching my child emotionally shutting down before my eyes. When I try to talk with him about how very ill she is, he just says, “She looks okay to me. I don’t know what you’re so worried about all the time."
When I am lying awake worrying about Mary, I wonder, How can he just fall right to sleep? I feel so alone. My annoyance has started to turn into resentment. My logical brain tells me Tom is dealing with this frightening situation his way but the emotional side of me perceives his reactions as a lack of sensitivity and empathy.
Mary got married young and within months her new husband had found someone else. He made a point of telling her that his new love was slimmer.
The day after her husband left, Mary came over to our house. All Tom did was pat her on the head before walking out of the room. I was beyond frustrated.
Like so many parents who are trying desperately to save their children’s lives from these illogical eating disorders, I find it helpful to do research. It is a coping mechanism that is helpful for me, as knowledge helps me reclaim some of the power and control the eating disorder stole when it invaded our lives. Even though some of what I learn is frightening, overall, I feel that being informed helps me support Mary more effectively and helps me know what my role needs to be. There is little else I can do as a parent to help my child.
I am often told by my husband and friends, “Don’t do that research because you’ll just freak yourself out more.” This kind of statement just increases my feelings of isolation and helplessness. I wish they could understand that researching helps me support Mary as she regains her health.
The failure of her short marriage was the beginning of Mary’s long downhill journey into sadness, pain, and self-destruction. She is a kind, loving, sensitive, caring person; all she ever wanted was to be married and have kids. After her new husband made it clear that this newer, sleeker woman was what he really wanted, Mary became obsessed with how she looked.
She became very negative about all aspects of her appearance. Nothing was good enough—her hair wasn't right, her clothes made her look "fat," etc. Then she stopped wearing makeup and wouldn't even shower regularly. It was quite apparent she was becoming depressed.
She wouldn't see friends, then lost her job and wouldn't even look for a new one, so needed to move in with us. About the time we thought things couldn't get worse she was diagnosed with the eating disorder.
Mary had been so secretive about her odd eating behaviors that it took quite awhile to get her to a doctor who could properly diagnose her. Tom and I had hoped that once she was seeing some treatment providers she would improve, but it has been a slow, painful process.
Today, Mary is trying to keep a job and go to school but things keep happening that make it impossible for her to maintain her schedule and stick to her commitments. Sometimes she cannot force herself out of bed; other times she is so down and dragged out from the medications that she just can't function. We see her daily struggles, and it just breaks my heart.
It is a challenge to not feel guilty about any role Tom and I may have played in this. Is it genetic? Did we give her genes that caused this? In addition, it appears that she inherited polycystic ovarian syndrome (PCOS) from me, which, ironically, is a condition common in people with eating disorders.
It hasn’t helped that some of the “professionals” seem to know less about eating disorders than I do. One doctor actually said to her, "Just push away from the table," which did so much damage. Yet that comment was not as hurtful as when the doctor said to me, "If she had anorexia it would be much worse. You don't have as much to worry about with bulimia." Unbelievable. It may be true that more people die from anorexia than bulimia, even though more people have bulimia, but this doctor obviously has not seen the way bulimia sucks the life out of its victims and steals our loved ones from us. Our daughter deserves treatment that works.
Right now the daughter I knew is gone, replaced by a shell of her former self. I miss her terribly and my broken heart grasps for the slivers of her that randomly appear. One Sunday afternoon we played cards. Her mind was sharp and she was actively engaged in the game. It was fun and we all even had some laughs. Then, just as quickly, that glimmer of her former self was gone; the zombie that had taken over my daughter's mind, body and soul was back. Those rare glimpses of her former self keep my hope alive and tell me that she's still in there somewhere.
I don’t know if our marriage can withstand this. Tom and I are both so tired and at a loss because it seems there is nothing we can do. I already have lost so much of my daughter—I can’t lose my husband too. The frustration, fear, and helplessness have us grasping at straws and we fight about what to do next. Something as simple as cleaning up after dinner can spark a major disagreement as I freak-out about Mary's plate left filled with food while Tom just brushes it off.
With the current job and unemployment stresses, (I recently had shoulder surgery and can't work). What little energy I have left is focused on keeping Mary alive. Tom also lost his job a few weeks ago but we still make time to spend a few hours together free of eating disorders conversation so we can have fun.
Most people would never know that this is yet another of the challenges facing families fighting these unrepentant disorders. People have no idea why we have found it hard to maintain a social life or even keep up the garden. The constant tension, arguments, and continual attempts to motivate her drain us.  Some days, just getting food on the table is a great accomplishment—and even then the battles begin again.
Through my research I’ve learned that relationship coaches and therapists can give some insights into how to maintain marriages and respect the male-female differences in reacting to a crisis. In the meantime, I think it is essential to give ourselves permission to stop trying to get the men in our lives to grasp the seriousness of these illnesses. We need to find support elsewhere for ourselves as well as our loved one.
I have one sister in-law who is sympathetic, because she has a niece who had severe anorexia. My sister-in-law and a woman at work are the only people, besides the therapist I see, who are able to give me any comfort, sympathy, or empathy.
I have found it useful to spend extra time with girlfriends as well as consciously remembering what attracted me to Tom in the first place. It has also helped that Tom and I have agreed to not play the blame game and respect our differences. We are determined to save our marriage from being a casualty of this illness. We know we both love our daughter: we just have different ways of responding to her illness. 
Here are some tools I've read about that couples have found helpful:
  1. Date night—have a firm rule to not talk about the ill child during the entire date.
  2. Family therapy—find a competent therapist (preferably one who understands eating disorders) that the entire family can see regularly.
  3. Get yourself individual therapy—or an objective third party to talk to.
  4. At home (not just date night), have a time block set aside with no discussion of your ill child or illness.
  5. Give one another backrubs or foot massages.
  6. Exercise together or agree to individual exercise.
  7. Find a fun hobby to do together.
  8. Read to one another about eating disorders (or share books).
  9. Take warm baths.
  10. Weekend getaways—if they don’t cause added financial burden.
  11. Meditate or practice yoga.
  12. Listen to your favorite soothing music.
  13. Go to a comedy club or rent funny movies regularly.
  14. Talk with other parents of seriously ill children who “get it.”
  15. Tag team when the child is extra challenging to be around.
  16. Consciously choose to be a “united front.”

Becky's Reply to Jess Weiner's Article In Glamour

August 11, 2011

Hi Jess, I’ve never been known as quick on my feet (well except when I had a toddler running herself towards some danger), I need to think about things a while.  Your article in Glamour gave me a lot to think about.

I am confused.

So, when I am confused I ask questions.  My coach hat has to go on for this because I am seeing what we call in our coaching lingo,  ‘collapsing’ of concepts.  It looks to me like all the confusion of Health At Every Size (HAES) and Body Acceptance has combined with scary messages from your doctor and has you collapsing the accepting of your body (regardless of the size it happens to be on a given day) with taking responsibility for keeping it healthy.

I can see how this happens, the two are very intertwined.  When I have a client who is collapsing concepts into one we ‘peel away’ the layers of the proverbial onion.  This is where the questions come in.  I respect you Jess and want you to know that no matter what size you are I will respect you – that includes if you are bigger or smaller.  The statement you made about wondering if your audience would respect you should your focus on improving your health result in weight loss confuses me.  Why, given that HAES truly focuses on health and not weight, would those of us in that world respect you less if you weighed less?

I really would love to hear your thoughts on that.  From what I understand of HAES, if we love our body where it is at that does not also equal choosing to do nothing about improving our health.  Two different things here.  This is the ‘collapsing’ I hear.

I totally get it about wishing to be a different size, sitting (way too much for my comfort) and writing my book about eating disorders I gained weight.  Fortunately I have never had an eating disorder and I am able to laugh about this – mostly.  Now that I can get out and move my body more often in fun ways and get back to eating things that will nourish my healthy body and give me energy I am doing that, my weight may change, it may not.  Yes, I’d love it if my clothes were not tighter than they used to be and my almost 50-year old body looked like it used to…but my main focus is my health and well being.  I want to be able to ski, swim, kayak, bike ride, hike, be alive and healthy until I don’t wake up one day.  That is why I do what I do to keep my body healthy – that is the focus, not weight loss.  This does not mean I am doing it right.  We each have to find out own way.

Next (since we aren’t in a coaching session and I cannot follow up to your answer to the question about respect) I am curious about what it was you (or your eating disorder – that you have publicly shared is still alive and well) heard from your doctor that pushed you in the direction of having weight loss as a goal rather than improving your health as a goal?

I am sad to hear you say, “Still, personally, I never would have gotten my healthier numbers without confronting my weight.”  I believe you and others can and do improve health indication numbers without confronting the weight. 

So, please help those of us who are confused, some angry about the shift in focus of your advocacy.  Deb Burgard, PhD has some interesting thoughts in her blog that I’ll also be commenting on.   There are a lot of people that your article and actions can influence and I hope that the eating disorder’s voice doesn’t overtake your voice on educating about Health At Every Size.  We need your strong voice in this community Jess.

 Another insightful article on HAES:

Please share your thoughts and responses here. 

Tuesday, August 9, 2011

How do I find balance when my child has an eating disorder?

How do I have balance during my child's eating disorder?  And, why do I need to even think about having balance?
The short answer is, this looks different for each of us and different during the different phases we go through.  And, you'll burn out very fast if you don't have balance.
The longer answer and my invitation for you to share what worked for you begins here.
I know balance is necessary because I didn't do it well in the early phases of parenting a child with an eating disorder.  Then I learned how to do it and practiced until it was effective.
I am not kidding about burning out.  It really is true that if we don't get our own oxygen mask on and fill our cup up we will run dry and not be of any use to anyone.
Our sick children/loved ones with eating disorders need our help (whether or not they agree with that is a different blog post).  If we are completely drained, fried and exhausted we will be of no use to them or ourselves.
Here are some of my ideas of what balance might look like during some experiences of caring for/about someone with an eating disorder (please share what has worked for you):
Potential Scenarios:
Parenting a young child/teen who has been diagnosed with an eating disorder and being treated with Family Based Therapy (FBT), Traditional Outpatient, Traditional Inpatient or Residential.
Being a college roommate or friend of classmate with an eating disorder.
Parenting an adult child who is in denial that he/she has an eating disorder.
Parenting an adult child who is being treated for an eating disorder.
Being the spouse/partner/housemate of an adult with an eating disorder.
Other potential scenarios that I didn't think of, please add in comments.
Balance creating actions:
Meditation / time alone to rest.
ED Free Zone/time with significant other.
Date Without ED - going out and doing something fun with friend or significant other.  See more on my notes page on FB
Making a Top 10 List (of fun activities) and doing at least one thing per day from it (ie- watch a movie, talk w/a friend).
Go to private space (ie- bedroom) with significant other and be alone without discussing the illness or the sick child for 2 hours.
Getting enough sleep and moving your body in a fun way.
Talking with a professional (therapist or coach) about coping tools/skills/techniques as well as resources for helping yourself and your sick child.
Journaling about your fears/worries/frustrations.
 These are just a few ideas, I would love to hear what works for you and if you need help finding more balance I would be happy to schedule some coaching with you.