As I have shared previously here, I have struggled with maintaining my mental health equilibrium for many years while my family member has been battling an ED. I've heard the description "situational depression." I've also heard PTSD.
Three years ago or so, I finally picked up the phone (for me, difficult to do because I am not a pill person) and called the number of a psychiatrist given to me by my excellent therapist. What finally got me to the phone was a combination of feeling utter despair because my family member was unable to move forward, in fact had returned to self-destructive behaviors following the latest treatment, and I was reading a book to write a review for NEDA. The book, by the way, was Crave by Cynthia M. Bulik, Ph.D.
I had come across a passage that described dysthymia and suddenly realized that the description of the disorder was how I felt.
If you're curious, you can read about my early steps in the anti-depressant world here.
Anyway, I migrated off the celexa which left me not caring about anything having to do with anything (talk about reducing anxiety!!) and started taking Buproprion, the generic version of Wellbutrin.
All went along fine mostly because, as it turns out, the manufacturer chosen by the dispensary used by my health insurance used a formula that worked for me. As I've also mentioned earlier, my psychiatrist explained to me that any product by law can range from 85% to 125% efficacy of the non-generic. And, I'll bet there's a genetics piece to this, too.
Then our medical insurance provider suddenly switched to a new dispensary. The first go-around with yet a different manufacturer of Buproprion went just fine. However, in the middle of the summer I received a refill from yet another manufacturer.
I didn't think anything of it until about two weeks later when I began to feel overwhelmed with my old feelings. After one particularly difficult day (the best description I can come up with is not feeling right in my own skin), I reflected that night on my life and what might be different and the only thing that popped to the surface was the fact that the Buproprion I was taking was different.
So, I called the dispensary and reported this the next morning. I did get an apology but no help so I called my psychiatrist's office. He immediately understood the situation having been my doctor now for quite awhile and ordered the non-generic from my local pharmacy which filled it the same day - 30 days worth. I was scheduled to see him in two weeks and that would give me a chance to see if the change made a difference (given how this med works) or not.
Taking the non-generic sure did make a difference. I felt so much better! The shocking thing, of course, is that the non-generic isn't covered by my insurance in spite of the fact that their dispensary sent me a worthless (for my genetic make up) version. So I went from paying a bit under $50 to a bit less than three times as much for thirty days of my med.
I have also learned that many people have struggled with this same problem with the generic of this medication and have had advocates who've managed to over-ride the system so that they can receive the "real thing." I am hoping to do this next. [This failed. My appeal was denied.]
Meanwhile, I had to spend quite a bit of time on the phone this morning getting the dispensary available to me to over-ride the old calendar renewal date for Buproprion and replace the rx with the new one for Wellbutrin sent in at the end of August by my psychiatrist.
It shouldn't be this difficult!!!!
Information is provided about eating disorders, particularly of adults, to parents and other loved ones written by a parent who is in recovery from an eating disorder.
Welcome
When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.
Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.
I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]
Travel Guide
If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox.
In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture."
I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Friday, September 13, 2013
Wednesday, September 11, 2013
Marjie Ruth: Are you adapting or changing.......
Another gem from Marjie Ruth. As usual, at her request for those who might want to re-post this, please include her contact information found at the end of her essay. Please consider leaving in as well the information about the support group she sponsors in case someone in the Tampa, FL area needs support and reads this.
I raised this topic last week in my meeting. No matter how many Al-Anon meetings I attend, how diligently I work my program, or how many times I repeat/review the Serenity Prayer and other valuable teachings, I still come back to this.......
I raised this topic last week in my meeting. No matter how many Al-Anon meetings I attend, how diligently I work my program, or how many times I repeat/review the Serenity Prayer and other valuable teachings, I still come back to this.......
"Our ability to
adapt is amazing. Our ability to change isn't quite as
spectacular."
~ from The Spellman's Strike
Again by Lisa Lutz
Dear Family & Friends of the Eating Disordered
(ffed);
Our support group will be meeting this Wednesday
evening (9/11) at the Hyde Park Counseling Center in Tampa at 7:00pm, as usual.
The ABA 12-step group is also continuing to meet at the same time, same place.
Yes, it's an historic date that brings back memories just saying the date. 9/11
- where were you when you heard the news of the terrible tragedy taking place?
We'll share that with each other at our meeting. And here's a thought: anyone
under the age of about 17 has no memory of that day, so for them it will be yet
another event to learn about in history class. Perspective changes
everything.
But let's move on to this week's opening quote which
is from a very lighthearted, fun book. Actually, this is the 4th book in what
has developed into something of a series, and I'd recommend reading the other
three first, beginning with The Spellman Files. These books fall into the
genre of "Something I Can Read That Absolutely Won't Depress Me & Actually
May Make Me Chuckle"...and every few moments spent reading such, ends up being a
micro-mini vacation for me. Ahhhh, sweet mindless escape. Are you surprised? You
don't actually think I sit around reading books all about eating disorders do
you? Heck, no. That would be a short path to depression and insanity. Dealing
with a loved one's disorder is punishment enough.
Now that's not to say that I haven't ever done such
reading. I've indulged in my share of psychology text book searching complete
with yellow highlighter at the ready. There's a bookshelf above my desk that
holds a fair size assortment of books relating to eating disorders, some better
than others and at least one that was a huge mistake. I've even spent time in a
university library digging into medical books and journals with determination
and a zeal to find some answers or at least some meaningful clues. My passion at
that point was born out of a raging desire to find a way to get my loved one
better, as in "back to normal healthy in mind and body" again. We seemed unable
to find any professionals that could help, so I was determined to find the way
myself. And there was nothing really wrong with my stumbling efforts to become
educated, except that I harbored the delusion that I could make my loved one
recover. I have never given up my desire to have my loved one be healthier and
happier--that is a mother's plight. What has changed is that I've gradually come
to the understanding, that I can't do it for her.
With this realization comes release: release of my
energy being funneled into trying to take control of her disorder; release of
the unrealistic desire that there is some magic formula that will make it all
better, ie The right treatment program or The right pill; release of the notion
that the more I focused on fixing things, then surely my efforts would be
rewarded. But don't think that I released such patterns of thinking and behaving
easily. Ha...far from it! Please refer to the opening quote which very concisely
sums up my journey with ED. Our ability to
adapt is amazing. Enabling is a form of
adapting to disordered behavior. Our enabling just makes our loved ones more
able to indulge their addictions. We adapt our life patterns of thinking and
acting to accommodate their addiction. Even upon recognizing this--as the second
part of the quote points out, Our ability to
change isn't quite as spectacular--changing our behavior
is anything but easy. I still find myself slipping back into old thought
patterns and needing to regain my footing and even re-examine choices in light
of possible enabling that has crept back in. It seems that the only constant in
life is change, and yet I'm consistently balking at & even feeling incapable
of changing my behavior or thought patterns.
For anyone, change is not easy, either to accept or to
achieve. For someone with an addiction, no matter what it is, change is
terrifying and seemingly impossible. "They" need to change their addictive ways.
And "we" need to change our enabling ones. Both tasks require a great deal of
time, determination, and practice. 12 step meetings are there for all of us.
Plenty of books provide helpful encouragement and advice. But for each of us,
taking good care of ourselves is a critically important point. We need to treat
our bodies and our minds in a healthy manner, and one ingredient in doing that
is taking the time to rest and recreate.
Which brings us back to the books by Ms Lutz. When was
the last time you treated yourself to some quiet, non-working, non-stressing
time? If you had trouble answering that inquiry, then it's been too
long! I encourage you to find yourself a good book and a comfortable chair
in a quiet spot and work on some recreational therapy for yourself. Put the cell
phone on mute, let the computer hibernate, and turn off the guilt. Start small
if you need to, but try it for even 5-10 minutes as a first step towards making
a change in your own life. Tell you what, if you'll promise to give it a try, so
will I. Let me know how it goes!
Marjie Ruth
727-244-9011 (c)
Sunday, September 8, 2013
The Evolving Science of Mind
Back in June, I added three books to my burgeoning bookshelves and went on to post briefly about one of them titled Brainwashed - the Seductive Appeal of Mindless Neuroscience written by Sally Satel and Scott O. Lilienfeld.
Shortly afterwards, David Brooks of the New York Times wrote a review of Brainwashed as well as commentary titled "Beyond the Brain" [June 17, 2013] noting, "It’s a pattern as old as time. Somebody makes an important scientific breakthrough, which explains a piece of the world. But then people get caught up in the excitement of this breakthrough and try to use it to explain everything."
Well, I thought, perhaps I should stop pressing for an fMRI for my family member and rely instead on proven testing as provided by a local neuropsychologist who in June spent six hours going through the testing and then interpreting the results to recommend next steps. He argued that fMRI's do not yet yield enough information to make formal diagnoses to take treatment to the next step.
Now along comes today's (Sunday, September 8, 2013, The Sunday Review, page 12) New York Times with a piece titled "The New Science of Mind" by Eric R. Kandel who is, according to the italicized information, "....a professor of the Mortimer B. Zuckerman Mind Brain Behavior Institute at Columbia, a senior investigator at the Howard Hughes Medical Institute and a recipient of the 2000 Nobel Prize in Physiology or Medicine, and [if that isn't enough] the author of "The Age of Insight: The Quest to Understand the Unconscious in Art, Mind and Brain, From Vienna 1900 to the Present."
Dr. Kandel provides an in-depth discussion not only on the biological basis and reported potential treatment of depression but also on the broader concept of the Science of Mind.
He points to the outcome of studies by Professor Helen Mayberg of Emory University and others of neural circuitry that has become disordered: one can treat a person more effectively with either an antidepressant or Cognitive Behavioral Therapy depending on whether or not certain areas of the brain seen in the fMRI are more or less active.
Pause here......... Really!?!
Kandel goes on to highlight four areas about the biology of mental disorders. The biology of mental disorders? So many of us who have family members with one mental disorder or another have been arguing, as Dr. Kandel writes, that "....mental disorders are biological in nature, that people are not responsible for having schizophrenia or depression, and that individual biology and genetics make significant contributions."
Those four areas in this discussion are:
1 - "Neural circuits disturbed by psychiatric disorders are likely to be very complex...."
2 - "....We can identify specific, measurable markers of a mental disorder, and those biomarkers can predict the outcome of two different treatments: psychotherapy and medication"
3 - "Psychotherapy is a biological treatment, a brain therapy. It produces lasting, detectable physical changes to our brain, much as learning does."
4 - "The effects of psychotherapy can be studied empirically."
Kandel also incorporates a discussion of the important contributions of genetics - a topic that is being addressed more frequently by many. In fact a succinct summary of what happens in each of us appears in a New York Times book review by David Quammen about George Johnson's The Cancer Chronicles. Simply taking a look at mitosis and entropy as explained by Johnson, Mr. Quammen describes what happens within our cells every day.
So what is the conclusion here? It's one that continues to be argued about by psychologists, psychiatrists, theoreticians, and philosophers among others. [From the Kandel piece]: "....This new science of mind is based on the principle that our mind and our brain are inseparable.... Our mind is a set of operations carried out by our brain. [And further], the same principle of unity applies to mental disorders."
My conclusion is that we still remain quite far from the day when one can receive effective personalized treatment for their brain disorder whether that brain disorder/malfunction causes, for example, anorexia or bulimia, schizophrenia, depression, obsessive compulsive disorder, anxiety, borderline personality disorder [ a misnomer], and manic-depressive disorder (bipolar disorder) -- or two or more of these at the same time.
And as a closing caveat I think it's important for family members, myself included, to recognize based on the genetics piece that we are all different, that our brains have evolved as we've grown dependent on our experiences, our genetics, our environment, and as well on the unique brain pruning process that occurs for each of us [will try to find a succinct link to describe this fascinating process]. Consequently what works as treatment for one person or even a few people might not work for others. The science of all of this is young and each person with a brain disorder must be evaluated independently and perhaps by more than one psychiatrist/psychologist before a course of treatment is adopted. Likewise, it's important to revisit that treatment and/or therapist if progress is not being made.
Shortly afterwards, David Brooks of the New York Times wrote a review of Brainwashed as well as commentary titled "Beyond the Brain" [June 17, 2013] noting, "It’s a pattern as old as time. Somebody makes an important scientific breakthrough, which explains a piece of the world. But then people get caught up in the excitement of this breakthrough and try to use it to explain everything."
Well, I thought, perhaps I should stop pressing for an fMRI for my family member and rely instead on proven testing as provided by a local neuropsychologist who in June spent six hours going through the testing and then interpreting the results to recommend next steps. He argued that fMRI's do not yet yield enough information to make formal diagnoses to take treatment to the next step.
Now along comes today's (Sunday, September 8, 2013, The Sunday Review, page 12) New York Times with a piece titled "The New Science of Mind" by Eric R. Kandel who is, according to the italicized information, "....a professor of the Mortimer B. Zuckerman Mind Brain Behavior Institute at Columbia, a senior investigator at the Howard Hughes Medical Institute and a recipient of the 2000 Nobel Prize in Physiology or Medicine, and [if that isn't enough] the author of "The Age of Insight: The Quest to Understand the Unconscious in Art, Mind and Brain, From Vienna 1900 to the Present."
Dr. Kandel provides an in-depth discussion not only on the biological basis and reported potential treatment of depression but also on the broader concept of the Science of Mind.
He points to the outcome of studies by Professor Helen Mayberg of Emory University and others of neural circuitry that has become disordered: one can treat a person more effectively with either an antidepressant or Cognitive Behavioral Therapy depending on whether or not certain areas of the brain seen in the fMRI are more or less active.
Pause here......... Really!?!
Kandel goes on to highlight four areas about the biology of mental disorders. The biology of mental disorders? So many of us who have family members with one mental disorder or another have been arguing, as Dr. Kandel writes, that "....mental disorders are biological in nature, that people are not responsible for having schizophrenia or depression, and that individual biology and genetics make significant contributions."
Those four areas in this discussion are:
1 - "Neural circuits disturbed by psychiatric disorders are likely to be very complex...."
2 - "....We can identify specific, measurable markers of a mental disorder, and those biomarkers can predict the outcome of two different treatments: psychotherapy and medication"
3 - "Psychotherapy is a biological treatment, a brain therapy. It produces lasting, detectable physical changes to our brain, much as learning does."
4 - "The effects of psychotherapy can be studied empirically."
Kandel also incorporates a discussion of the important contributions of genetics - a topic that is being addressed more frequently by many. In fact a succinct summary of what happens in each of us appears in a New York Times book review by David Quammen about George Johnson's The Cancer Chronicles. Simply taking a look at mitosis and entropy as explained by Johnson, Mr. Quammen describes what happens within our cells every day.
So what is the conclusion here? It's one that continues to be argued about by psychologists, psychiatrists, theoreticians, and philosophers among others. [From the Kandel piece]: "....This new science of mind is based on the principle that our mind and our brain are inseparable.... Our mind is a set of operations carried out by our brain. [And further], the same principle of unity applies to mental disorders."
My conclusion is that we still remain quite far from the day when one can receive effective personalized treatment for their brain disorder whether that brain disorder/malfunction causes, for example, anorexia or bulimia, schizophrenia, depression, obsessive compulsive disorder, anxiety, borderline personality disorder [ a misnomer], and manic-depressive disorder (bipolar disorder) -- or two or more of these at the same time.
And as a closing caveat I think it's important for family members, myself included, to recognize based on the genetics piece that we are all different, that our brains have evolved as we've grown dependent on our experiences, our genetics, our environment, and as well on the unique brain pruning process that occurs for each of us [will try to find a succinct link to describe this fascinating process]. Consequently what works as treatment for one person or even a few people might not work for others. The science of all of this is young and each person with a brain disorder must be evaluated independently and perhaps by more than one psychiatrist/psychologist before a course of treatment is adopted. Likewise, it's important to revisit that treatment and/or therapist if progress is not being made.
Tuesday, August 6, 2013
Courage, Hope and Support Groups
Occasionally I provide posts here written by Marjie Ruth who hosts a support group for parents of loved ones with ED in Tampa, Florida. I've left that section of the post here in case anyone living in the area needs a support group. I know when my loved one was diagnosed and for several years afterwards I did not know where to turn for support. Tucson has a great support group now and I can put anyone who reads this who lives in this area in touch with the leader.
When my loved one's illness returned with a vengeance, I called a friend who is also a therapist in hopes of learning of someone who might be able to work with my loved one. My friend offered some words of wisdom, given my loved one's physical state at that point, which were "Hope for the best, prepare for the worst."
I have spent the past 9 years doing just that while taking care of myself in a number of ways as well as continuing to search and uncover opportunities for my loved one to, if they are willing, pursue treatment(s) that will lead to recovery.
I realize that the phrase "if they are willing" will irk some readers who don't believe it's wise to wait until willingness happens - and I agree when someone is first diagnosed with an ED -- so I want to note here for a newcomer to my blog that my frame of reference involves more than eleven years of treatment in a variety of settings as well as in the past year a return to a brain nourished state. At some point the willingness of an adult with an ED to work with experienced therapists and other team members becomes part of the equation, especially when -- I've provided a link to information from the National Alliance on Mental Illness (NAMI) -- insight (as opposed to anosognosia) is apparent. I pray daily that the willingness will kick in. My loved one has a will of iron; would that my loved one would resolve to get on the road to recovery!!!!
Continuing to hope, I know, takes a lot of courage. Much of what Marjie writes in the following post I'm sure is recognizable to so many of us who have a loved one with an eating disorder. As research by people like Dr. Walter Kaye continues, as information about co-diagnoses and their influence on eating disorders becomes known, and as work by family members and others to offer a shoulder to lean on (and so much more) increases - F.E.A.S.T., Maudsley Parents, NEDA, etc., - there remains a great deal of hope........
Dear Family & Friends of the Eating Disordered;
The support group will be meeting again this week at 7:00pm on Wednesday evening (8/7) at the Hyde Park Counseling Center in Tampa. We've been having some great discussions, and this week we'll begin taking a closer look at a book called "The Happiness Trap" by Russ Harris. I'm looking forward to seeing any & all who can make it, and please be assured that all are welcome. The ABA 12-step meeting will also be happening upstairs. Please shoot me a quick email if you think you will make it to the meeting.
From the subject line and from the opening quote, it might appear that I'm adding yet another word beginning with "C". Courage is most certainly one that we could add to the list. I think finding the courage to persevere, overcome denial, and confront the necessity of change within ourselves is a huge part of coping with a loved one's serious addiction. On a day to day basis, it sometimes seems to require almost Herculean strength just to get out of bed to face another day of doubt and despair, frustration and fear, anger and anxiety. Living with someone who is deep within the grip of an eating disorder (or any addiction) is surely akin to experiencing a bit of hell here on earth. Those of us going through it can not really describe it or explain what it's like to others...not only is it painful and embarrassing to detail, but it also seems to defy any adequate verbal expression. Yeah, guess you just have to be there--but I certainly wouldn't wish that on anybody.
As we share in group there are always nods of agreement as someone describes what would seem to any "outsider" as a patently insane scenario, but for those in the room it's pretty much universally understood. I guess to some degree misery does love company because there are times that we laugh as we realize that we don't have to explain or justify to others in attendance because they've visited the very same depths of the disease. It's a laugh of some relief at the fact that we don't have to defend with this group. It's an expression of true empathy that comes from mutually shared experience made even more significant by the suffering at its core. Often when I speak with someone for the first time, whether in group or over the phone, they're amazed that I know so clearly what they're talking about and surprised when I can share descriptions that are completely in line with their own. After groping alone and in the dark with the horror of this disease, there is some comfort in finding others who understand and have seen first hand what they and their loved ones have lived through and to talk about it.
And that's probably the main reason we cling to one another: we seek hope and crave reassurance. So while courage is an important attribute, we are focused on that which may give us courage...hope is the ingredient that helps us to cope. Having hope means more than just wishing that things would get better. Hope requires some basis upon which to have an expectation of things to come. We might search for that basis in the form of a medicine, a treatment center, or a therapist for instance. We scour the internet, ask medical professionals, and pray for answers. When we read or hear of someone's recovery, we want to know the key factors and how we can make use of them. We find some hope in another's recovery even while dealing with the fear at the edge of our mind that wonders if it will happen for us.
Perhaps our time of greatest hope is when our loved one goes in for residential treatment (hey--with 24/7 therapeutic care and a price tag that makes one cringe, haven't we paid for a bucket load of hope?). Going in for treatment is a very big step, and with it comes expectations for some real recovery. Come on, let's be real here. Our hope is that serious treatment will result in a very real cure. OK, if you're well versed in your "C" words, you know that we don't think in terms of a cure, so we'll settle for some serious progress. But how can we help but expect some big bang for all those bucks??
Look back over the last two paragraphs, and you'll notice the 3 italicized words. Ring any bells for you?? One of the premises that I've talked about previously is that expectations are the building blocks of future resentments. Those is ED therapy talk about the expectations of others by using terms like "trigger", "burden", "stumbling block", and "wall". One of the common personality traits of the eating disordered is that of being a people pleaser and a perfectionist. Our expectations (including those we've expressed &/or implied as well as those they may assume and imagine) have a huge impact on our loved ones, usually more than we realize as their impaired coping skills may blow them out of proportion. Thus it behooves us to be aware of the expectations we do harbor and to be willing to examine their source and question their validity. While we may hope for progress towards recovery, are we expecting an unrealistic amount of change? Is the hope that therapy will help develop better emotional coping mechanisms while the expectation is that the eating disorder will be gone when residential program concludes? Is the hope that he or she will learn to make healthier decisions, and the expectation is that all those decisions will be the same ones that we would make??? And what will our reactions/responses be when those expectations aren't met? More importantly, how will such expectations affect our loved ones?
So, where does this leave us as far as our having hope is concerned? Hopefully, it will help us to think more deeply about just what it is that we are hoping for. A young girl may hope to be a princess when she grows up. We smile at the notion even as we hold her in our arms and twirl her about the room. There is no worry as we enjoy the childhood innocence, confident that in due time her maturity will bring her hopes in line with reality. Shouldn't we ask the same of ourselves--that our hopes be mature & in line with reality--and especially so knowing that our hopes do affect our expectations which in turn have an impact on those we love?
Eating disorders are horrible addictive diseases that ravage bodies and even claim lives. Yes, that is an awful truth. But an equally important truth is that there are many people who have managed to progress well into recovery and are leading very productive, fulfilling, and happy lives. I personally know individuals who have managed to crawl back from the depths of very serious ED's and are now enjoying healthy adulthood with successful careers, happy marriages, and even as parents of their own children. Recovery is possible. Recovery does happen.
You've heard the expression: Be careful what you ask for, you may get it. For us it is more a matter of learning what to hope for. Do I hope that my daughter will get to the point that her decisions are always ones that I approve of--or--should I consider hoping that she will grow to a place where she will have the confidence to be honest with herself and others and be able to think more clearly about the decisions she makes so that she will be confident in them and able to live comfortably and healthfully with the consequences? There is a big difference, and I hope I am learning to understand & use that knowledge in my own life because making some critical adjustments in my own thinking may be the best thing I can do for my daughter.
And what about you? Are you willing to examine your own hopes? Gosh, I hope so.
Marjie Ruth
727-244-9011 (c)
When my loved one's illness returned with a vengeance, I called a friend who is also a therapist in hopes of learning of someone who might be able to work with my loved one. My friend offered some words of wisdom, given my loved one's physical state at that point, which were "Hope for the best, prepare for the worst."
I have spent the past 9 years doing just that while taking care of myself in a number of ways as well as continuing to search and uncover opportunities for my loved one to, if they are willing, pursue treatment(s) that will lead to recovery.
I realize that the phrase "if they are willing" will irk some readers who don't believe it's wise to wait until willingness happens - and I agree when someone is first diagnosed with an ED -- so I want to note here for a newcomer to my blog that my frame of reference involves more than eleven years of treatment in a variety of settings as well as in the past year a return to a brain nourished state. At some point the willingness of an adult with an ED to work with experienced therapists and other team members becomes part of the equation, especially when -- I've provided a link to information from the National Alliance on Mental Illness (NAMI) -- insight (as opposed to anosognosia) is apparent. I pray daily that the willingness will kick in. My loved one has a will of iron; would that my loved one would resolve to get on the road to recovery!!!!
Continuing to hope, I know, takes a lot of courage. Much of what Marjie writes in the following post I'm sure is recognizable to so many of us who have a loved one with an eating disorder. As research by people like Dr. Walter Kaye continues, as information about co-diagnoses and their influence on eating disorders becomes known, and as work by family members and others to offer a shoulder to lean on (and so much more) increases - F.E.A.S.T., Maudsley Parents, NEDA, etc., - there remains a great deal of hope........
Courage is what it
takes to stand up and speak;
courage is also
what it takes to sit down and listen.
~Winston
Churchill
Dear Family & Friends of the Eating Disordered;
The support group will be meeting again this week at 7:00pm on Wednesday evening (8/7) at the Hyde Park Counseling Center in Tampa. We've been having some great discussions, and this week we'll begin taking a closer look at a book called "The Happiness Trap" by Russ Harris. I'm looking forward to seeing any & all who can make it, and please be assured that all are welcome. The ABA 12-step meeting will also be happening upstairs. Please shoot me a quick email if you think you will make it to the meeting.
From the subject line and from the opening quote, it might appear that I'm adding yet another word beginning with "C". Courage is most certainly one that we could add to the list. I think finding the courage to persevere, overcome denial, and confront the necessity of change within ourselves is a huge part of coping with a loved one's serious addiction. On a day to day basis, it sometimes seems to require almost Herculean strength just to get out of bed to face another day of doubt and despair, frustration and fear, anger and anxiety. Living with someone who is deep within the grip of an eating disorder (or any addiction) is surely akin to experiencing a bit of hell here on earth. Those of us going through it can not really describe it or explain what it's like to others...not only is it painful and embarrassing to detail, but it also seems to defy any adequate verbal expression. Yeah, guess you just have to be there--but I certainly wouldn't wish that on anybody.
As we share in group there are always nods of agreement as someone describes what would seem to any "outsider" as a patently insane scenario, but for those in the room it's pretty much universally understood. I guess to some degree misery does love company because there are times that we laugh as we realize that we don't have to explain or justify to others in attendance because they've visited the very same depths of the disease. It's a laugh of some relief at the fact that we don't have to defend with this group. It's an expression of true empathy that comes from mutually shared experience made even more significant by the suffering at its core. Often when I speak with someone for the first time, whether in group or over the phone, they're amazed that I know so clearly what they're talking about and surprised when I can share descriptions that are completely in line with their own. After groping alone and in the dark with the horror of this disease, there is some comfort in finding others who understand and have seen first hand what they and their loved ones have lived through and to talk about it.
And that's probably the main reason we cling to one another: we seek hope and crave reassurance. So while courage is an important attribute, we are focused on that which may give us courage...hope is the ingredient that helps us to cope. Having hope means more than just wishing that things would get better. Hope requires some basis upon which to have an expectation of things to come. We might search for that basis in the form of a medicine, a treatment center, or a therapist for instance. We scour the internet, ask medical professionals, and pray for answers. When we read or hear of someone's recovery, we want to know the key factors and how we can make use of them. We find some hope in another's recovery even while dealing with the fear at the edge of our mind that wonders if it will happen for us.
Perhaps our time of greatest hope is when our loved one goes in for residential treatment (hey--with 24/7 therapeutic care and a price tag that makes one cringe, haven't we paid for a bucket load of hope?). Going in for treatment is a very big step, and with it comes expectations for some real recovery. Come on, let's be real here. Our hope is that serious treatment will result in a very real cure. OK, if you're well versed in your "C" words, you know that we don't think in terms of a cure, so we'll settle for some serious progress. But how can we help but expect some big bang for all those bucks??
Look back over the last two paragraphs, and you'll notice the 3 italicized words. Ring any bells for you?? One of the premises that I've talked about previously is that expectations are the building blocks of future resentments. Those is ED therapy talk about the expectations of others by using terms like "trigger", "burden", "stumbling block", and "wall". One of the common personality traits of the eating disordered is that of being a people pleaser and a perfectionist. Our expectations (including those we've expressed &/or implied as well as those they may assume and imagine) have a huge impact on our loved ones, usually more than we realize as their impaired coping skills may blow them out of proportion. Thus it behooves us to be aware of the expectations we do harbor and to be willing to examine their source and question their validity. While we may hope for progress towards recovery, are we expecting an unrealistic amount of change? Is the hope that therapy will help develop better emotional coping mechanisms while the expectation is that the eating disorder will be gone when residential program concludes? Is the hope that he or she will learn to make healthier decisions, and the expectation is that all those decisions will be the same ones that we would make??? And what will our reactions/responses be when those expectations aren't met? More importantly, how will such expectations affect our loved ones?
So, where does this leave us as far as our having hope is concerned? Hopefully, it will help us to think more deeply about just what it is that we are hoping for. A young girl may hope to be a princess when she grows up. We smile at the notion even as we hold her in our arms and twirl her about the room. There is no worry as we enjoy the childhood innocence, confident that in due time her maturity will bring her hopes in line with reality. Shouldn't we ask the same of ourselves--that our hopes be mature & in line with reality--and especially so knowing that our hopes do affect our expectations which in turn have an impact on those we love?
Eating disorders are horrible addictive diseases that ravage bodies and even claim lives. Yes, that is an awful truth. But an equally important truth is that there are many people who have managed to progress well into recovery and are leading very productive, fulfilling, and happy lives. I personally know individuals who have managed to crawl back from the depths of very serious ED's and are now enjoying healthy adulthood with successful careers, happy marriages, and even as parents of their own children. Recovery is possible. Recovery does happen.
You've heard the expression: Be careful what you ask for, you may get it. For us it is more a matter of learning what to hope for. Do I hope that my daughter will get to the point that her decisions are always ones that I approve of--or--should I consider hoping that she will grow to a place where she will have the confidence to be honest with herself and others and be able to think more clearly about the decisions she makes so that she will be confident in them and able to live comfortably and healthfully with the consequences? There is a big difference, and I hope I am learning to understand & use that knowledge in my own life because making some critical adjustments in my own thinking may be the best thing I can do for my daughter.
And what about you? Are you willing to examine your own hopes? Gosh, I hope so.
Marjie Ruth
727-244-9011 (c)
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