Navigating In Uncharted Waters

Navigating In Uncharted Waters –

Practical Suggestions for Supporting Your Loved One in All Phases of Their Eating Disorder Journey

by Don Blackwell

Several years ago, I was asked to give a talk at a national eating disorder conference and charged with the task of sharing my thoughts as to how parents (dads in particular) could best support their loved one’s treatment and recovery journeys. It was a rather daunting undertaking, especially given that I’m not a medical professional and don’t have any specialized training in the diagnosis, care, or treatment of eating disorders. I was just a dad, whose 18 year-old daughter found herself in the crosshairs of a monster named anorexia nervosa and nearly died as a result of it, and a husband who, with his wife, came to the fight mostly ignorant of just how powerful and insidious eating disorders are and of the toll our daughter’s illness would take on all of us before it was through.

In preparing my conference remarks, however, I realized we’d learned a lot along the way, mostly through trial and error, and I eagerly shared it that day, in the hope that our experiences might enable another family to shed one less tear, endure a little less anxiety, have just a little more hope.  I did so keenly aware of the fact that: (1) for all they may have in common, eating disorders and those who are afflicted with them are highly individualized (i.e., each sufferer’s life, medical history, family situation, and recovery journey are unique and they should be treated as such); and (2) there are many evidence-based treatment options other than the residential model we chose.  I share again today, several years removed from the battlefield, with the same intentions and hope.

THE DISCOVERY AND PRE-TREATMENT PHASE

If you’re like many people, your first encounter with an eating disorder was marked by a wide range of emotions:

A period of denial – This is the period during which you might say or think things like: “My loved one’s not really that sick.” “It’s just a phase they’re going through, it’ll pass.”  “They just need to eat a little more or exercise a little less – or both.”

A sense of anger and frustration – Here, even though you may not say it, every fiber in your being is screaming: “Just eat a damn hamburger!” Dads are particularly good at this one.

A period of panic – This is when the realization hits that your loved one really is sick and they’re not about to “eat the damn hamburger!”

A period of questioning your adequacy and competency as parents – “What could I or we possibly have done to ‘cause’ this problem?”

A search for understanding – “What do we do now?!?”

A heavy dose of fear and

A momentary sense of relief – when you (or, better yet, your loved one) finally decide on a treatment option, and you take comfort in knowing that they’re in the care of professionals.

I wish I could say this is the hard part, but, the truth is, at least based on our experiences, it’s really only the tip of the very complex and challenging iceberg that is the world of eating disorders and the road to recovery.

THE TREATMENT PHASE

There are a number of things I believe you should be sensitive to while your loved one is in treatment (don’ts) and an equal number of ways you can be supportive of them, their treatment team, and your own emotional well-being (do’s).

A few things to be avoided:

DON’T TRY TO REASON WITH AN EATING DISORDER:  When your loved one is in their “disordered eating mindset” they are mostly irrational.  That being the case, it does little good and only aggravates an already difficult situation for you to attempt to reason with them. If you see a conversation heading in that direction, simply and respectfully attempt to re-focus it on a topic other than the eating disorder or, if that seems impossible in the moment, terminate it with an understanding that you will re-connect with your loved one later in the day in a quieter moment.

AVOID THE URGE TO BE DEFENSIVE:  In the course of your loved one’s eating disorder, you are likely to hear things about your loved one’s childhood and your parenting that are going to lead you to believe that your loved one didn’t grow up in the same house with you.  Avoid every urge to lash out in an effort to defend yourself or your parenting skills – it will only generate more anger, tension, and anxiety in both you and your loved one and it won’t bring them one step closer to accepting your version of reality.

PERCEPTION IS REALITY: One of the most difficult concepts to grasp, as you (and your loved one) begin to work your way through the maze of their eating disorder, is that PERCEPTION IS REALITY.  What I mean by that is it really doesn’t matter what you intended to do as a parent or even what you actually did!  Your loved one’s REALITY is the way they perceived and understood those words and events and they need to be “heard” (and those issues need to be addressed) with that in mind.

BE SUPPORTIVE OF THE TREATMENT PROFESSIONALS:  Don’t get drawn into your loved one’s efforts to criticize/rebel against every aspect of their treatment program and those responsible for implementing those policies.  This is not to suggest that you shouldn’t be cognizant of (and, at times, question) the practices and policies of the program or the treatment professionals.  But, at the end of the day, it is the treatment professionals who best understand what your loved one needs (and needs to avoid) to most effectively battle their illness and it is imperative that if and when you are afforded the opportunity to do so you convey that to your loved one – directly and unequivocally.

DON’T EXPECT YOUR LOVED ONE TO EMBRACE TREATMENT WITH A SMILE:  Understand that for someone whose mind is compromised by an eating disorder and who is committed to clinging to it, a program designed to return them to medical and psychological health by first restoring them to a healthy weight and then challenging the “falsehoods” that underlie the disorder is not something your loved one is likely to embrace with a smile.  In fact, your loved one may rebel against treatment with every fiber of their being.  Don’t give that any energy.  Hang on.  Chances are it will pass. 

WE COULD ALL BE BETTER PARENTS, BUT MOST OF US AREN’T NEARLY AS BAD AS OUR LOVED ONES MAY THINK:  Avoid the urge to “beat yourself up” about what you likely will identify as numerous deficiencies in your parenting skills.  Truth is: You probably were much better parents than you (or, perhaps, even your loved one) will ever give you credit for.  Most of us love our children and try our best to be good parents.  Moreover, I’m certain there are some terrible and incredibly neglectful parents out there whose loved ones don’t have an eating disorder.  Having said that, when presented with something that warrants you acknowledging that you were wrong or could (and should) have handled things differently don’t hesitate to express your feelings on the subject.  Be vulnerable. Admit you’re not perfect.  Seek forgiveness.  It will make a tremendous difference.

DON’T TALK ABOUT THE COST OF TREATMENT OR INSURANCE:  Avoid any discussions relating to the cost of treatment or the difficulties you may be having with your insurance company regarding reimbursement for treatment in front of your loved one and take care to advise the treatment facility that they are to be similarly diligent in ensuring that financial matters are not discussed in your loved one’s presence.  There are at least two compelling reasons for this:

  1. Your loved one feels guilty and shameful enough already about what they perceive to be the “burden” their illness is placing on you and on the family – you don’t need to add to that.
  2. Your loved one is looking for “excuses” not to be in treatment and pointing to the expense of it typically is the first line of attack.

A few things that I believe can make a positive difference

Listen to your loved one with an open, attentive and non-judgmental heart.

Love and support your loved one UNCONDITIONALLY and reassure them, at every opportunity, that your unconditional love and support are not being offered “just because they’re sick”, but will continue to be just as strong when they’re well.  In short, give them “permission” to heal.

It is important to instill an “opposite” voice.  The “eating disorder voice” is quite strong, demeaning and hyper-critical.  It would have your loved one believe many things – that they are unloved, that they are not worthy of love, that the shame they feel is well-founded, etc. It is a litany of lies and distortions, which left unrebutted, can have serious consequences.  For that reason, I believe it is imperative that there be someone in your loved one’s corner who is fully committed to instilling what I like to refer to as an “opposite” voice, one that simultaneously acknowledges and validates the sufferer’s struggle and pain, while at the same time encourages them and coaxes them on. At times, the “opposite voice” must be soft and reassuring – almost comforting.  At other times, however, as the journey grows more difficult and your loved one’s inner voices of self-doubt, inadequacy, and unworthiness become defiant, the “opposite voice” may need to become louder, more emphatic, and unequivocal.  The goal here is simple, but critical:  Ultimately, the “opposite voice” has to drown out its hurtful and self-limiting counterpart just long enough for your loved one to catch a glimpse of their true potential, and hopefully, create a desire to catch another glimpse, and another, and another.

“Reintroduce” your loved one to positive people, images, memories, and activities that you remember them loving or being passionate about before they got sick.  In my mind, recovery and healing require that your loved one re-connect with their “healthy”, pre-disordered eating self.

Be vulnerable with your loved one – perhaps for the first time.  Let them know you’re human and imperfect – and that you embrace their humanness and imperfection(s).

Don’t be bashful about asking your loved one, in a quiet moment (i.e., when they are not in their eating disorder) how you can help them help themselves.  Specifically, ask them what they need or want to hear from you when they are struggling – or when they are doing well – and what behaviors and words they want you to try and avoid.

Make it a point to be fully present.  Attend visiting hours, family or “mom and dad” sessions, and weekly family group and parent sessions.  Listen and be willing and prepared to share your feelings openly.

Work hard to restore or reinforce a sense of trust, to relinquish “control” or, more specifically, to empower your loved one to take responsibility for their own well-being.

Make sure your loved one knows, by hearing you verbalize it, that you are proud of them and their hard work, courage, and perseverance in overcoming their illness.

Take a minute to write a note or a card to your loved one from time to time.

The Post-Treatment phase – the Road to Recovery

Most people who have had loved ones battle an eating disorder and who have received treatment in a residential setting will confide that the “coming home” is one of the most difficult stages, if not the most difficult stage of the eating disorder treatment process. Why? Because your loved one has grown accustomed to being in a very structured environment with lots of support, particularly around meal times.

For this reason, it’s important to access “step down” (e.g., IOP, etc.) programs if you are able and they are available.  These programs help to ease the transition and provide some meal support.

It’s also helpful to have an outside treatment team in place comprised of a knowledgeable ED therapist and nutritionist and, if necessary, a psychiatrist and to encourage your loved one to take full advantage of those resources.

It’s important to maintain healthy boundaries with your loved one and to empower them to care for themselves.

Work hard to avoid constantly asking your loved one how they are doing and feeling – and, most of all, avoid staring at them at meal time to ensure that they’re eating the way and the amounts you think they should.

Let your loved one know that you want to be properly supportive and ask what they need from you in that regard.  Listen carefully and be attentive to their advice.

EXPECT THERE TO BE DAYS WHERE YOUR LOVED ONE WILL SLIP OR TAKE A STEP (OR TWO) BACKWARDS.  IT IS THE NATURE OF THIS BEAST AND DOES NOT NECESSARILY MEAN THAT THE BOTTOM IS ABOUT TO FALL OUT.

DON’T OVERREACT OR PANIC IF A SCHEDULED MEAL OR SNACK IS MISSED. IT HAPPENS.

Remain appropriately vigilant. If you feel that there is a legitimate basis for concern (i.e., if you perceive that your loved one is obviously struggling and is isolating, not been communicating, routinely skipping meals, missing appointments with her treatment team, etc.) communicate your concern in a loving manner first to your loved one and, if that is not productive, with a member of their treatment team.

REMEMBER:  Your principal role as a parent in this journey is to love and support your loved one UNCONDITIONALLY and to be physically and emotionally available to them at all times. But, at the end of the day, it is your loved one’s responsibility to choose life, fully embrace, and do what is required to not only sustain, but nurture it.

A FEW CLOSING THOUGHTS

The journey to the finish line of “full recovery” is never the same for any sufferer or their loved ones.

Some will sprint the entire way, while others will walk.  Still others may stop and start several times, before they finally arrive.

Many will encounter expected or unexpected obstacles that cause them to stumble and fall down. Others will seemingly take two GIANT steps backwards for every small step forward.

An even smaller percentage may have to crawl the entire way or have to go back and start over.

The point is: It doesn’t matter how you get there or how long it takes.  What’s important is that you and your loved one not give up until you do.

I’m not about to minimize the challenges confronted by those suffering from eating disorders and their loved ones.  To the contrary, if our experience is representative, I can tell you with certainty that, given the insidious nature and power of eating disorders, those challenges are likely to be among the most daunting and emotionally exhausting you will ever have to face.

I’m equally confident that your and your loved one’s ability to meet those challenges, as well as your courage and the resiliency of your minds, bodies, and spirits are far greater than either you or your loved ones likely realize at this moment.  I urge you to draw upon that strength and support each other in what I hope will ultimately be a healthy and fulfilling life.

About the author:

Don Blackwell is a 59 year old trial attorney with Bowman and Brooke, LLP in Miami.  He recently celebrated his 37th wedding anniversary.  He and his wife, Cyndy have two adult children, Greg and Ashley.  Don is the author of “Dear Ashley . . .” – A Father’s Reflections and Letters to His Daughter on Life, Love and Hope (Imbue Press 2013).. Don is a former member of NEDA’s Parents, Family and Friends Steering Committee and has presented or co-presented at several national, regional and local eating disorder conferences and webinars.  In addition, Don has authored articles dealing with dads, daughters and eating disorders that have appeared in NEDA’s Making Connections newsletter and in Perspectives, the Renfrew Foundation’s Professional Journal.  Don previously moderated and contributed to a blog entitled, Sharing Your Loved One’s Journey at www.eatingdisorderblogs.com. He also contributes to his own blog, www.donblackwell.wordpress.com and can be found on Twitter @donblackwell4

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