Thursday, September 20, 2012


Eating disorders are gaining more attention it seems.  As a parent of a bulimic ten years ago and later an anorexic, I felt like I lived on an island.  A really scary, lonely island.  No one wanted to talk about it.  No one wanted to talk to you.  I had never heard of NEDA or any other organization or support system nationally or locally.  Now that seems to be changing.  Which is great!  And there seems to be more attention and understanding about the disease, and the men and women who have it as well.  But, while there are exceptions, there still doesn't seem to be a lot of focus on what "after" looks like.  One would hope that I mean recovery.  Of course, in my case, that's not what I mean for one of my daughters.  And, at the heart of my little recent setback with grief recovery, "after" is what raised its head and said hello.  In a way, our grief and loss kept us from focusing on that part of it.  The fact that there is a real cost to this disease that lingers long, long after the actual disease itself has left the building.  I think this is probably true for any family who has dealt with a major illness.  But, this is my experience, so it's the only one I can talk about.  And I mean that both physically and financially.  The financial stuff first...

I am not sure if my estranged sister-in-law still reads this blog, I assume she doesn't, but this would be the one I hope she would read.  I know it's hard for her to understand what it cost, emotionally and fiscally, to get through the last ten years.  How could she?  It's time that she knew and then maybe she can know that I am not stingy out of pettiness at least.  Probably everyone should read it, maybe in particular insurance providers, and I wouldn't mind if Mitt Romney took a peek at how the other half lives.  But, here's the thing, without going into details because they are boring, a couple of semi-related things happened a few weeks back that reminded me exactly where I stand in the grand scheme of things economically.  Let's put it this way, after meeting with my financial advisor, I realized that it's a good thing I've gotten used to having a postage stamp sized kitchen, because this is as good as it's going to get.  And I've got some serious work to do in the next ten years if I'm going to be set up to be able to have a decent retirement for both Greg and myself.

Don't get me wrong:  we're okay.  We live a nice life.  I have a membership to the zoo, I go to the occasional football game, baseball game and - God willing - hockey game.  But, I think I put blinders on to a certain extent once the house in Texas sold and that meeting brought me back to the reality that I needed to be living in.  And there was some shock involved when I had to realize that, after years of working at a really brutal pace, this is what I have to show for it.  That sounds so greedy.  Maybe it is.  But, the reality is that I'm lucky I have any resources for retirement at all.  The costs we incurred to try and help our daughters will resonant for the rest of our lives.  I know we're not alone.

I think there is a perception among people who have never experienced ED that it is a rich person's disease.  That's not true, but I did observe that the individuals we came into contact with were well off because they were the families who could afford treatment.  Kelsey was all too aware that she was from more modest means than many of her co-residents when she was in treatment, and we were making more money than 75% of Americans!  The reality is that it is a complicated and expensive disease to treat and the recidivism rate is steep.  Here are just a few of our facts:
  • At the time our daughters were ill, average residential treatment cost about $1,000 a day.  Many insurance companies would not cover any of it, others would only cover a portion.  Patients pay up front and then seek insurance reimbursement.  Kelsey went to treatment three different times for a total of five months, or 150 days.  Marissa also had a residential stay for her own reasons.
  • Residential treatment often means leaving your geographic area, at least if you want decent care.  That involves travel costs:  airfare, hotels, maybe rental cars, and time away from work.
  • Kelsey began therapy at 14, so for nine years she visited at least one therapist once a week.  Later Marissa had her own and we went to family therapy.  In all that time, one counselor did take insurance, none of the rest did.  Sessions cost on average about $100 per, but we would not have made it through as long as we did without it.  That component was critical.
  • Nutritionists.  Both girls went to them.  Kelsey hated it and refused to go long-term, so that was not a major expense in her case.  Marissa stuck with it.  $100/session on average.  Maybe you can find one who takes insurance, but we didn't.
  • While not all patients see a psychiatrist, we had one as part of the treatment team - and that's what it is, a whole team of people.  You put together a group of professionals who all have to work together to try and help.  Many shrinks do take insurance, but ours did not.  We chose him though because he was good.  Many are not so good, or rather, many are not right for the patient.  Probably more than any other medical discipline, you have to have a level of comfort with the individual prescribing you psychotropics and messing with your head.
  • Medical doctors.  You'll probably have more than one.  Kelsey's primary care provider was a specialist in eating disorders.  We were lucky that he lives in Austin.  He wasn't successful with Kelsey, but at least he understood the situation and didn't make it worse.  But, he didn't take insurance and his services were specialized and therefore not cheap.  He had an initial intake fee that was nearly $700 at the time and the per visit cost was, as I recall, $160 a visit.
  • Medications.  Those are covered by insurance in most cases, but the co-pays add up.
  • Rent and other living expenses.  We were told Kelsey should not come home when she was discharged the last time from residential treatment.  This is not atypical for individuals recovering from issues like ED or addiction:  you don't bring the individual back to the place where they practiced the behavior.  Talk about a trigger.  Obviously that is not recoverable by insurance.
  • For three years running, we spent out of pocket the same or more than my gross income after insurance paid what we would coax out of them for medical expenses.  That is not taking into account any of the other ancillary expenses.
I did have to borrow from Mother and still owed her when she died.  We took out a second mortgage on the house and went through almost all our retirement and all of Kelsey's college fund.  We never filed for bankruptcy, but I thought about it.  A lot.  I kept current on our bills, something that I'm highly proud of, but I constantly had to worry about money on top of everything else and sometimes there just wasn't enough.  Again, we were making more than 75% of Americans, and I was digging through the change jar for grocery money.  So, sitting here today, in my little house with its little kitchen, I'm probably pretty damn lucky indeed that I have what I have.  But, to the end of my days, ED will impact all of us.  I will never have that time when I don't have to worry about money, at least a little.  Do I regret spending it?  No, I was trying to save my children.  Would I spend it again?  Of course.  But, this is my life after ED.  Humbled and modest.

At the end of the day, when my daughter was taking her final slide, I had nothing left to help her.  That's the only part I regret.  The part I really struggle to get past and forgive myself for.  I just didn't have enough money left.  It's too late for Kelsey, so I worry now about those people whose parents don't make more than 75% of the rest of us.  What do they do?  Because while there may be more awareness now, it's no less complicated, and it's no less expensive.

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