One Woman's Journey

We had a guest speaker at our last support group meeting.  She shared her journey of addiction to prescription drugs, as well as her battle with anorexia.   She was honest, forthright and candid about her struggles. 

Keep in mind that these are her thoughts and opinions, based on what she has experienced and learned through her walk with addiction and eating disorders.

She felt it was very important to get the anxiety under control.  We know ED’s are an anxiety based disease.  She felt that once her anxiety was better controlled, she was able to deal with the other areas in her life that needed work.

She recalled as early as kindergarten feeling ashamed due to the fact that she had failed a vision test.  She was pulled out of line and set aside.  Most kids would not think much of it; however, she felt ashamed she had failed.  This is a perfect example of what Jenni Schaefer says about eating disorders:  genetics loads the gun, society pulls the trigger. 

As she spoke, her feelings mirrored many of the symptoms that plague our loved ones.

She also said that entering treatment for an eating disorder, in her case anorexia, was much like a heroin addict experiencing the symptoms of withdrawal – the vomiting, cramping, etc., except for those with eating disorders, it’s all on the inside.  Quite a sobering visual, isn’t it? 

She also said her siblings were good at sports – she did not excel at sports, but her dad always did tell her she was pretty; hence, she felt valued only by her looks.  She also made decision to please others even if it was not what she wanted to do.  She did not allow herself to have a voice. 

Someone asked her if her family was involved in her treatment – back then, as was true with my own daughter, the family was not involved in the treatment process.  We now know how important it is for the whole family to receive help.  She recalled coming back from treatment and her mom hugging her and saying “we will never let you go back there”.  She said that her parents thought they could “love” her through it.  While being supportive and loving is important, it is certainly not the only thing.  She said it is important to get your voice back and face your anxieties.  She said her parents should have continued to encourage her to get help. 

She also said she felt she knew what people were feeling and thinking.  We have often talked in group about how sensitive individuals with eating disorders are – once described to me as having lots of “antennas” – they feel everyone is talking about them, looking at them, making judgments about them. 

One point she made, and I really liked this one – it is important to ask those in treatment from eating disorders “What did you hear me say?”  We all know what we say and what they hear is different.  Sufferers live life with an ED filter – their perception is very skewed.  I think this is an excellent way to handle a difficult situation.  It would also help them to see that their reality is not our reality.

She also recommended a couple of books:

Strengths Finder 2.0

http://www.amazon.com/StrengthsFinder-2-0-Tom-Rath/dp/159562015X/ref=sr_1_1?s=books&ie=UTF8&qid=1341962317&sr=1-1&keywords=strengths+finder+2.0

Deadly Emotions

http://www.amazon.com/StrengthsFinder-2-0-Tom-Rath/dp/159562015X/ref=sr_1_1?s=books&ie=UTF8&qid=1341962317&sr=1-1&keywords=strengths+finder+2.0

I have given you the links through Amazon to see what they are about and you can decide if these might be helpful.

At the end of the meeting one of the other members also made an excellent suggestion – to ask the sufferer when they are making demands, etc., or you feel they are being unreasonable – to ask them if they are trying to control or assert.  This should give them pause to see what is behind what they are trying to say.  As stated above, it is important to find their voice, but as caregivers, we have to know who is talking – their true self or the eating disorder.

Family members must also be prepared to do their own work to support and encourage the recovery process.  The main obstacle I faced was coming to terms with the fact that I could not "fix" my daughter.  I, too, needed to learn more constructive ways to cope. 

Families Must Create a Team Approach

At our last support group meeting, we all had the privilege of learning about a family's journey through an eating disorder.   As of right now, they are doing well in their battle against Ed (an acronym for eating disorder).  


The operative word here is "their" battle.  This disease is a family disease.  Treatment has come a long way since my daughter was diagnosed many years ago.  My attitude was to just "fix her" and we can all get on with life.  The disease had disrupted my sense of self and family.  Also, what if people found out?  The stigma!  The bottom line is I was embarrassed and ashamed of having this label put on our family.  


It is important that families move past the shame and the blame.  Don't waste precious time trying to determine why your loved one has an eating disorder.  It's here now, deal with it now.  Reach out to others who know how to help you and support you.  You will get well-meaning, sometimes hurtful, comments from other family members and friends.  Bottom line is - they don't understand what you are going through.  Tell them you appreciate what they are saying and then move on. This disease is so complex and recovery is not easy -- for the sufferer or the family.  Everyone needs to do their own work.  Families need to stand united against the disease and help loosen it's grip on the sufferer. 


It is also important to make that distinction between the person and the disease.  Your loved one is not an eating disorder.  They will need to learn that distinction and it will help if you do, too.  I came across this quote some years ago:

What makes eating disorders difficult to overcome without professional help is the insidious way they progressively damage an already impaired self.

They ultimately become the person’s identity, rather than merely an illness the person experiences.

As the family shared their experience, it was evident to me that they all worked together.  From the pain on their faces, I could tell it was not an easy road.   They are still receiving professional guidance as they continue to navigate the path towards full recovery.  

Do individuals recover from eating disorders?

Good afternoon and happy Monday!

At our last support group meeting, a new member posed a question that fostered quite a bit of discussion.

Is it possible to recover from an eating disorder?

My response:  Absolutely.  I believe with all my heart that you can fully recover from an eating disorder. 

A few individuals at the meeting felt that their loved ones would be plagued by it all their life -- that it was just not possible to fully recover.  Perhaps for some people, sadly, that might be true.  Recovery requires very difficult work, commitment and a tremendous amount of pain.  You have to work at it every day and seek support from others and give up control of a disease that has become part of your life.

We also talked about dual diagnosis.  Dual diagnosis is when you have an eating disorder, coupled with any other addiction or mental or emotional illness, i.e., depression, anxiety, substance abuse.  It is not uncommon for those suffering with an eating disorder to also suffer from another form of emotional pain or addiction. We see many common personality traits among those with eating disorders such as anxiety and perfectionism.

When family members talk about recovery, they need to understand that much of these personality traits are hardwired into the individual and they need to learn new and constructive ways to cope rather than falling back on their eating disorder behavior.  It will require a professional team of doctors, therapists and nutritionists to help them see that their eating disorder is not their best friend.  Learning to trust others is difficult.  It takes time and families need to learn to be patient.  Do they want quick results and an easy fix?  Sure they do.  I did.  I thought that after being in treatment for six months, my daughter was fine.  She was doing well physically; however, her emotional healing took a very long time.

Family members need to understand it takes time to change behaviors and it takes time to learn new ways to cope with the anxiety, depression or other emotional issues.

Jenni Schaefer, author of two wonderful books, "Life Without Ed" and "Goodbye Ed, Hello Me", talks about her recovery process in "Goodbye Ed, Hello Me":

I am grateful that people who had been through it themselves told me, "It is possible to be fully recovered from an eating disorder." Knowing that in recovery could become fully recovered was pivotal in my life, so I like to offer that same hope to others today. 
 

Many people out there are at the same place I am in regard to their eating disorder, but they prefer to keep saying that they are in recovery as opposed to being recovered. They believe that the moment they say they are recovered is the moment they will relapse. The phrase "in recovery" reminds them that life is a process and that there is always room to grow. Of course, an important part of my being recovered encompasses this life growth as well, so you might be thinking that this is all a lot of semantics. 

To further confuse you, a friend of mine who's in recovery from alcoholism and an eating disorder actually uses both terms. She says that she works a recovery program daily and is thus in recovery. But quoting the Big Book of Alcoholics Anonymous, she also says that she is "recovered from a hopeless condition of mind and body." 

Each person's road to recovery is different.  They need to do their work and we, as family members, need to do ours.  Sound simple?  It's not.  Eating disorders and all their emotional baggage are a family disease that can take us down roads we never imagined.  We have to be open to change, if we expect our loved ones to recover.  They won't be the same person after recovery and neither should we.

Last Saturday, I had the opportunity to speak to a class at the Pleasant Hill Campus of JFK.  This class was part of a certification program for those therapists wishing to specialize in eating disorders.   I was asked to do a presentation and talk about what it was like to have a loved one with an eating disorder.  What was it like to be on the front lines every day.  At times, it is difficult for me to go back to those days but I have to put aside the anxiety it may bring in order to help other therapists assist parents through their own journey.

Following the presentation, I was asked many questions -- one question in particular gave me pause -- I had to really think about what to say.  The question was, during my daughter's childhood, would I have done anything differently.  Yes, I told this therapist, there were probably many things I would have done differently; however, the one that was foremost in my mind was that I would not have been so dismissive of my daughter's feelings.

A common thread that runs through eating disorder patients is that they are very sensitive -- they have many antennas, and they feel and cope with situations on a very emotional level.

When I was a child I was taught to just tough it out -- suck it up -- sometimes life is hard and you just forge ahead and not complain about it.  As my grandmother told me once (and this is a direct quote) "you need to take life as it comes and shut up about it."  Please don't misinterpret my words -- my family was very loving and kind but they came from a tough stock of Italian immigrants.

Unfortunately, that was how I dealt with my daughter.  Unfortunately for her, this was not a good idea.  She learned her feelings didn't matter and that perhaps how she felt was wrong.  I needed to let her feel her emotions and also to reinforce that there is no right or wrong way to feel -- feelings are feelings.

So my answer for this therapist was to listen more, fix less and not dismiss how a child was feeling.  It does not matter if their feelings seem irrational to us -- what matters is that those feelings are very real to them.  Let them have a voice and listen.

College Dilemma

Good morning -- happy Thursday.  Just returned from my morning walk with my lab, Haylee.  We don't go as fast or as far as we used to -- we're both older and stiffness from her two knee surgeries have definitely slowed her down.  However, she still enjoys getting out to smell, meet her dog friends and imagine chasing those elusive squirrels.

A recent topic of discussion that seems to come up often at support group is whether or not to send a child away to college who had, or still is, battling an eating disorder.  That is a tough dilemma and one my husband and I faced some years ago.  If I had to do it over again, I would not have let her go away to college.  I knew she wasn't stable enough to handle the transition into college, both physically and emotionally.  However, I let her go.  Less then three weeks later, she was back home.   Her decision to not return to school, live at home and attend a local community college was the right one.

Families need to work closely with their treatment team and decide what is the best course of action depending on where their loved one is in their disorder.  A treatment team and support system needs to be in place wherever they are going to live.   A geographical relocation does not mean the eating disorder will not follow them to college.  It will be their constant companion until they are strong enough to stop listening to it's seductive voice. 

Disappointment will surely follow a decision to not allow a child to move away and attend college, especially when all of their friends are talking about and deciding where they will be going.  One question I always asked myself when deciding what to do was this:

Am I making this decision because it makes me feel better and alleviates my guilt or am I making this decision because it is the best one for my daughter's future?

Doing what is right is sometimes heartbreaking. It certainly was for me.  Eating disorders just don't go away.  It takes hard work and a tremendous amount of time, but there is hope and there is light at the end of what seems a long and dark tunnel.  

Good morning . . . It's Been a While

Happy Tuesday ~ it has been a while since I have posted on this blog and I do apologize.  Time to be honest.  I was having a conflict as to whether or not I wanted to continue with the support group or anything else relating to an eating disorder.  I felt burdened.  Yes, burdened.  Burdened.  Heavy.  I could not explain it.  Perhaps it was time to pass the reins on to someone else; however, I was not going to make any hasty decisions. 

I was sitting on my sofa in my family room really thinking about what was going on.  Where were these feelings coming from?  I started to pray.  I asked God for help with this decision.  Was it really time to move on?   The phone rang interrupting my talk with God . . . hmmm . . . Hello?  It was a parent . . . their daughter had an eating disorder . . . they did not know what to do . . . we talked.  At the end that parent thanked me for being there.  For listening. 

Shortly thereafter, I left for my support group meeting.  We had some new faces that night.  One mother walked in and the pain in her eyes was the same pain I saw in my own many years ago.  I had my answer. 

This was not about me.  This was about all those families who are looking for answers.  If I still allowed the eating disorder, through my help with others, to be burdensome then I had to look at my motives for helping others.  Thankfully, my family has moved past this disease.  It no longer has a hold on us, but I was still allowing it, indirectly, to yet again become a burden.  I sent it packing.  I realized that I cannot "fix" this disease for others, but I can offer them hope, an ear and a hug.  Sometimes, that is all that matters. 

Story of Hope

At our support group meeting last Monday, we had a guest speaker who shared her journey of hope through her daughter's eating disorder.

She talked about the “wasted time” of denial, trying to solve and fix which lead to co-dependency.   She was a friend of her daughter’s disease.  She also spoke of the “why me, why us” scenario.  I remember doing that many times – my own personal pity party.  Truly wasted time.

As AA does, you do need to give it up to whatever your higher power is.  It sounds cliché’, but it is so beneficial.  When you realize you have no control over this disease and what it does, you will be lighter.  One important statement she made that really stuck with me is this: 

Let them own their disorder.  We, as loved ones, can provide services, i.e., resources, taking them to appointments, etc.  Keeping ourselves separate from the disease sends a powerful statement to the disease.

She then stressed the importance of getting help – for everyone.  This is a family disease.  You need to forgive yourself from mistakes made in the past and understand the importance that the sufferer and you need separate paths.  It reminds me of the analogy of the ED sufferer as a person who is drowning.  You need to throw them a life ring.  If you jump in and join them, you will both drown.  We each need to do our own work.  If your child will not seek help, then you go seek help for yourself.  If nothing else, you will learn how to model your behavior to something the sufferer might learn from.

Also, own what is yours to own.  If you are doing the best you can, move on.  If you know in your heart of hearts you can do better, take steps to make it better, especially for you individually.  When we are better, they will notice.   It is important to mirror for them what we want for them.  This is not easy at all, but just one small step at a time will turn into very large accomplishments, as well as one small change after understanding that accomplishment will make all the difference in recovery.

Her daughter makes a great effort to practice her recovery every day.  She makes good solid behavior choices and is doing well in her life.  Her daughter uses the recovery skills she learned in treatment every day and so does this wonderful mother.  Her face exudes joy.  She always makes an effort to continue to model her own behavior to show her daughter what she wants for her daughter’s life and to show her just how fantastic life can be.  She talked about how wonderful life can be when your journey takes you completely through all the steps to successful recovery.  Let them see that you have self-worth and dreams and they will realize that they do as well.  Let them see that you have hope in them and that their dreams are important.

A few comments were shared following the discussion that they must own the disease and we must detach from the disease.   For those with younger children with an eating disorder it was confusing as to how we can detach when they need us to take them to appointments, etc.  We can provide services to them without getting involved in their disordered behavior.  Give their disease back to them and let them own it. 

 She also shared that a therapist told her, yes, she is a child, but she has a very adult disease.  Some were confused about that statement.    We must realize that we are not dealing with a case of chicken pox that will just pass through.  This disease is much stronger and has many levels.   Detaching ourselves from the disease isn’t easy.  It took me years to detach.  However, when I did, I got stronger and the disease lost steam.  

My own personal journey was a painful one.  I am still in therapy and I am still recovering.  Having a child with a life threatening disease is not something you can easily let go.  You can, however, move past it and embrace the here and now and share your own story of hope and recovery.  Recovery, on both sides, is a great place to be.