April 3, 2015

the economics of eating disorder activism: what it costs

Let's talk about money. My next few posts will explore the economics of eating disorder activism.

It doesn't cost a thing to become an eating disorder advocate or activist. There's no qualifications and the price of entry is an interest in the topic. The hours are flexible, the working conditions are, too. The rewards: they vary.

You can start a blog or Twitter feed or participate in Facebook groups for free on your own time and build quite a voice. Anyone can call a legislator, write a letter to a policy-maker, or email a journalist. With time, relationships, and a point of view your voice can really be heard and have influence and be part of larger streams of chatter. I wish more people did, because to go viral a message has to have people to infect!

After a while the time can become expensive, if it takes away from paid work or requires you to pay others to do things you would do yourself. Time is expensive it it means your partner has to work longer or at different work to enable you to do your advocacy. There is an opportunity cost, as well, for having a blank resume when you want to go back to paid work.

There are expenses to advocacy, even at your laptop. Free websites don't look or act like paid ones. Business cards and flyers and postage and newspaper ads all add up. Buying books and access to articles to educate ourselves is expensive. Printer ink, subscriptions, phone calls, software, legal services, donations, memberships: they cost money.

But travel, that's the kicker. Being an advocate and activist (slightly different things) means being there. You can gather a group to meet at the local pizza shop every month for the price of a slice, of course, but in order to be part of the larger advocacy world you have to show up where others are. especially at conferences.

ICED conference, Boston, 2015
Registration for non-members: $640   (membership is $250 a year)
Hotel $239/night for 3 nights but really need 4 = $717
Meals $20 x 6 = $120 (bare minimum, but the conference doesn't serve many free meals)
Transfers and airfare = at least $400
Total: $1877 not including beer

NEDA conference, San Antonio, 2014
Registration: $450
Hotel $184 x 3 nights = 552
Meals: $15 x 6 = $90
Transfers and airfare = $400
Total: $ 1492 not including margaritas

Drive there, find a roommate, eat peanut butter sandwiches, and stay in a sketchy AirB & B nearby, and you can cut a bunch of that down, but it's still a 4-5 day stretch away from home spending money. This is an extreme luxury for most parents and patient advocates, families who have often been depleted by treatment costs.

At over $1500US a trip, an advocate can join the fray at a conference one time. That's one trip, and it often runs much more, and that's only for trips in your own country. One trip does not an advocate make. It can take years of showing up to build relationships to the level that you can make change or have an influence. It takes time to learn the players, gain trust and alliances, to be invited to the table, and figure out where you want to put your energy.

So, how do people pay for being an advocate? Specifically, how do parents do so?

Mostly, we pay out of our own family budgets. I've been a full time advocate for most of the past decade and it has been expensive. Not only have I not taken paid work, even with FEAST paying my expenses for travel and materials for several of those years it is still an luxury activity. Sales for my books, about $1 net each, do not scratch the surface: that is just a way to pay a few of my advocacy expenses. Any money I earn, plus a great deal more, goes into paying to be an eating disorder advocate. When I worked and traveled for FEAST I had no salary -- FEAST's staff is all volunteer -- and no other job. I'm not unusual here: none of the authors or independent advocates I know make any money for their work: we SPEND to be out there.

When we are invited to speak, which are priceless opportunities to get the word out, we almost always PAY to attend the event and to travel there, plus registration.

When we volunteer for committees and are invited onto boards that time and money is our own to give, but our responsibility to pay.

Let's not even bring up the cost of nice shoes!

Unlike our fellow advocates who are professionals in the field we do not have our travel and registration subsidized and we do not get professional accreditation or fulfill licensing requirements by attending events. It isn't a professional expense and doesn't go on our resume.

So, why am I telling you this? It isn't to whine about my finances or to complain. That has been my family's choice.

I have two points. One is to laud the volunteers in mental health advocacy and eating disorder advocacy. You can't imagine how much passion and commitment this work requires. Parents who do it are doing so purely to help others avoid pain. I don't think the public understands the personal sacrifice and commitment that advocates offer willingly. I don't think armchair observers understand that those out there showing up also represent the vast majority who don't have the luxury of time and money to get out there and influence the conversation and policy.

This goes for parent advocates and also patient advocates. They take on often full-time work for no pay and no benefits JUST TO HELP OTHERS. They start foundations and organize events and run websites and write books to help others, not for fame or fortune or advancement. They feel that change is needed and they feel a responsibility to be part of it.

So when you are asked to "like" a post or retweet or make a donation keep in mind that those making those actions happen are almost always volunteers giving of themselves to help you. When you see an advocate out there organizing something know that they are putting their money and their personal life into it. If you ever wonder "why isn't someone doing X" remember that someone has to step up and do and pay for it.

I don't know what the solution is. We need parents and other advocates out there part of policy-making and advocacy. Our voices matter and make a difference. But the price is high and there is no angel to pay for it. There are so many wonderful advocates out there who have he passion and skills but can't afford financially to do it. Without patient activists and parent activist those voices don't get heard and policy goes on without their point of view. Without those volunteers most advocacy doesn't happen. Phones aren't answered, events don't happen, and website searches can only bring up what people have created. Policy-makers and journalists don't know the difference between well-paid nonsense and real lived experience.

Money may seem like the last thing to matter when it comes to advocacy, but it matters a great deal.

**Two groups asked me to be on panels to speak at AED this year, and both were accepted. I cashed in all my air miles and piggy bank, but still can't afford it. I applied for and was awarded an AED carer scholarship for which I am very grateful. It doesn't cover the whole expense but it really helps.

26 comments:

  1. The unsung hero for me personally is my husband--I am fulfilling my passion (which thankfully he shares though in a less vocal fashion) and reaping the internal rewards that go with that, while he is simply having his own travel budget slashed to nothing.

    I think it would be very helpful if AED and other groups would offer an Advocate rate in recognition of the fact these expenses are entirely out of pocket for most of us. And yes, there are many amazing voices which will never end up at a conference due to financial constraints.

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  2. JDO, you bring up such an important issue: dads. Let's be honest: it is mostly moms out there doing advocacy and without the support of dads/partners our voices would not be there. I'm not sure why more dads don't throw themselves into it (I have some theories), but I think we especially need more fathers in the mix. My husband is, like yours, the silent but full partner making my "work" possible -- at no small cost to our family's budget and lifestyle. This is a family effort: with the kids offering moral support!

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    1. Most fathers of teenagers who suffer from anorexia nervosa, that I know, simply don't like eating disorder psychotherapists. We find them weird. They are in love with treatment methods based on mythology: psychoanalysis, psychodynamic therapies, family systems therapy, CBT, interpersonal therapy, and bizarre, eclectic, mixtures and combinations. These models were not designed to treat anorexia nervosa, and they have failed in clinical trials. They persist due to inertia and habit, because they are more convenient and enjoyable for the professionals to implement, and because in countries with fee-for-service health care, such as the U.S., the professional psychotherapist will actually make more money for herself the longer the teenager is allowed to suffer from anorexia and remain in treatment. In other words, there is a clear conflict of interest between the therapist and the suffering teenager.

      By contrast, most of the fathers I know discovered FBT as a result of their own initiative, not because professionals informed them. These dads work with their families to re-feed their kids and help re-establish normal patterns of eating behavior. They don't want or need professional psychotherapists to be involved. Their teenagers also tend to hate being "in therapy." Therefore, dads don't understand why there is a need for advocacy in the first place, or what, specifically, the advocacy would entail. These fathers have founds that it's better to spend your energy re-feeding your kid, and advising other families when asked, rather than trying to change the way the eating disorder profession operates.

      In a published study, 59 kids with AN and their families were given FBT treatment. At the end, it was found that the relationship between therapeutic alliance and weight gain was actually negative for fathers. In other words, the WEAKER the alliance between the father and the professional psychotherapist, the MORE weight the kid gained. Ellison, Do the Components of Manualized Family-Based Treatment for Anorexia Nervosa Predict Weight Gain? Int J Eat Disord 2012 May; 45(4): 609-14
      http://www.ncbi.nlm.nih.gov/pubmed/22270977

      This helps to confirm that the dislike that fathers tend to have for professional psychotherapy is reasonable.

      Chris

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    2. Family-Based Treatment IS a professional psychotherapy. Just saying.

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    3. Absolutely Laura! FBT is very much professional psychotherapy and while my sample size of one father does somewhat conform to Chris' description of males who would "never go near anyone with a psych in their title" (a brilliant description coined or repeated by by our GP) those practising FBT would come top of his list of people to avoid if only because the method seeks to involve him whereas others might allow him to stand back from treatment and perform the role of father rather than being encouraged to perform the role of psychiatric nurse 24/7.

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    4. My personal opinion is that families should try to avoid involving professional psychotherapists if their child or teenager suffers from anorexia nervosa. This means parents would do their best to re-feed their kid and help her re-establish normal patterns of eating behavior, while maintaining, as much as possible, a normal life outside supervising meals and snacks. During the time they are re-feeding, parents would take the initiative to educate themselves on the scientifically-reliable evidence for treatments, for instance, by reading all available randomized controlled trials and published treatment guidelines, then acting as treatment providers in lieu of professional psychotherapists. Essentially, this would mean doing "FBT" without involving a psychotherapist.

      If that approach isn't working, however, and the kid is not starting to gain weight within about one or two months, then it's probably not unreasonable to get professional help. Among the alternatives, manualized Family Based Treatment has the strongest evidence and, in my personal opinion, represents the best-available, although obviously not perfect, approach. Ironically, a key aspect of FBT is that it puts the obligation of finding a solution to the anorexia back on the parents. The professional is a consultant, but resists the temptation to override the opinions of the parents or take charge.

      I have always said that fathers need to step-up if their kid develops anorexia nervosa. AN is dangerous. It can lead to a lifetime of suffering, disability, and death. I know many fathers who have made their kid's recovery from anorexia the top priority in their lives, putting everything else to the side, including careers and financial security of their families, and devoting huge amounts of time and careful thought to how best to get their kid re-fed and returned to sustainable eating behaviors. Most of the dads I know have received little help from professionals in accomplishing this.

      Most professionals have never re-fed an anorexic teenager outside the sheltered environment of a hospital or residential center. They barely have a clue how to do it. Furthermore, most eating disorder psychotherapists suffer from mental illnesses that impair their effectiveness, distort their thinking, cause them to cling, rigidly, to outdated treatment models, and make it difficult for them to accept criticism without responding in highly emotional ways.

      I have attended professional conferences in London, New York, Washington DC, Austin, and San Jose. I have never been to a conference, however, in which a professional has offered scientifically-backed evidence for how to re-feed a starving teenager who is suffering from anorexia. At the same time, I have seen many instances at these conferences in which professionals have criticized parents, individually and collectively, taken an arrogant and condescending approach to parents and families, while at the same time offering up theories on how to treat AN that were based on no logic and no evidence. I stopped attending these conferences. They were a waste of time and money.

      Today, my daughter is completely recovered. She has maintained a healthy weight for seven years and has a relaxed attitude about food and eating. She has little, if any, concern about body weight or shape, a wonderful social life, warm and supportive friendships, and a successful professional career. If I had continued following the lead of the professional psychotherapists, on the other hand, I have every reason to believe that the downhill trajectory on which they had launched her would have continued indefinitely.

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    5. You are wrong. Dangerously wrong. Luckily, you seem to be entirely alone in your bizarre insistence that FBT is something done without professionals AND that the professional literature supports that. The evidence you cite doesn't support anything you are saying. Your conception of AN and FBT are both inaccurate.

      I speak as a parent who did have to "go it alone" to a great degree and became a parent activist so that parents would not have to. I don't call what we did "FBT" for a reason: it wasn't.

      Most of the professionals out there treating eating disorders are, indeed, using unfounded and unhelpful treatments. To me, the solution is to press for better training, more accountability, educating parents on their options, and fundamental changes in how we fund and go about advocacy. Throwing out all clinicians is the opposite of helpful and the avoidance of professional care is dangerous for patients and for their loving families.

      I say this not to influence your opinion, Chris, but to make it clear to those who hear your spews -- er -- views that I reject them completely and know no one who shares them.

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    6. Laura,

      Maybe I need to make myself clear. I don't contend that "FBT is something done without professionals." If we define "FBT" as treatment by the manual, then a professional is involved, obviously.

      What I have said, however, is that it's entirely possible for parents to successfully treat a child or teenager for anorexia nervosa without doing FBT, as defined, or otherwise involving professionals.

      In fact, as you say, you "went it alone" to a great degree, and your kid recovered.

      Chris

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    7. What you describe is not parents treating their child. Far from it.

      And as far from what we did. We were desperate for professional support for our family and ended up working remotely and having consultations with people far away and then working with a local therapist who read the FBT manual and collaborated with us and our pediatrician and an adolescent physician in a neighboring region, as well as a psychiatrist. When our daughter relapsed years later the landscape had changed and there was FBT professional support an hour away and we travelled to them. We had to fight for FBT-oriented care based on modern knowledge of EDs, and it took far more money, education, time, and stress than any family should have to. THIS is why I became an activist.

      Encouraging parents to eschew ED professionals entirely is irresponsible and wrong. We need to take responsibility as parents to find the BEST professionals we can, work with them as allies and partners, do our own homework and assert ourselves, and I encourage all parents to join in advocacy to CHANGE the professional landscape so the best possible treatment is available.

      Parents should not be dealing with life threatening mental illness on their own any more than we should be managing cancer care or diabetes on our own. Our kids deserve parents with the confidence and commitment to search out and thoughtfully engage with treatment. Society deserves a more professional and accountable and better trained professional world. I'm working for that.

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    8. Good luck with that Laura. In the meantime, I know many parents who are perfectly capable of reading the FBT manual, all the scientific studies, and all the professional treatment guidelines, and figuring out for themselves how to best treat their kid's anorexia. My wife is one. She is more highly educated than any of the professionals we encountered, with an undergraduate degree from one the best universities in the world, a PhD in neurobiology from the University of California, research publications in scientific journals that eating disorder professionals can only dream about, many years of experience and training as a classroom teacher of teenagers and young adults, a positive relationship with our kids, and more motivation to help our kid recover than any of the professionals we encountered, all of whom were willing to be involved only if we paid them a lot of money.

      I think you are insulting a lot of parents, including my wife, when you argue that it is "irresponsible and wrong" for them to eschew professionals.

      If your professional friends had developed better treatment methods, I would feel otherwise. At the present, time, however, it is clear that professional psychotherapy will yield recovery less than half the time. I'm not willing to be satisfied with those odds, and neither are most of the parents I know.

      Let me know when you have succeeded in changing the pros.

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    9. It is hysterical that you hold up the very professional literature and methods and ED professionals as the basis for your argument that those methods and thinking are unnecessary. Those professionals developed the "better" methods you are, yourself, citing in some circular and irrational argument of how parents should replace them.

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    10. Laura,
      You missed the point. Parents read the professional literature and conclude that the eating disorder profession is seriously screwed up. There is no consensus definition of anorexia, little knowledge of causes or risk factors, wide variation in symptoms to such an extent that AN is probably not a single condition, widespread irrational prejudice against parents and families, no proven professional treatments, and no agreed-upon definition of recovery. The professional field is in disarray. The professional literature confirms this. Parents read the literature, realize they are fools to rely on professionals for help, and then decide to take mattes into their own hands. Most parents who do this experience success. Their kids recover.
      Why don't you report back to us after the ICED2015 conference and tell us all about the great advances your friends there have made. We're waiting.
      Chris

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    11. No, you've missed the whole forest for your particular trees.

      Parents don't read the professional literature. Most clinicians don't either. If they did, they would as you and I both have, find that there is no consensus and that the field is in disarray. You conclude the answer is to tell parents to reject the field. My conclusion is to both help parents be empowered with that information to know the difference between good treatment and bad AND I work to change the field.

      You used to believe that too. You've changed, and that's fine. I haven't.

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    12. I changed because I keep abreast of the professional literature and I see that things are getting worse, not better.

      I don't "tell parents to reject the field." I recommend that parents study the field very, very carefully and draw their own conclusions.

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    13. By the way, Laura, who appointed you to be an "advocate" for parents? Most I know don't want you advocating for them. You are too impressed with professional psychotherapists, and you encourage parents to be submissive and ill-informed. You also draw sweeping conclusions from a lack of evidence. For example, you say, above, that "parents don't read the professional literature." Where do you get that? There are about two million parents of anorexia sufferers in the United States. How do you know what they read and don't read?
      As for F.E.A.S.T., I think it is important to keep it in perspective. With about 5,000 members, out of 2 million parents, you can claim a membership of less than one-half of one percent of the parent population. In other words, more than 99.5% of parents have not joined your organization.
      Chris

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    14. We muddle through, Chris, we muddle through.

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    15. I certainly muddle through, although at times if I hadn't had Laura and other FEAST friends to muddle through with I don't think I would have managed it. Personally I would also not have managed it (as in keeping my child alive) without professional help as well, and I don't know anyone other than you who thinks that families should have to manage on their own. Maybe we just mix in different circles, but if that's the case I think I'll keep it that way.

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    16. I haven't said that families should "have" to manage on their own. I have said that some families are able to manage on their own and therefore should not be given the false impression, before even trying, that they won't be able to do it.

      Unfortunately, parents are given the wrong message all too often. For example, on the F.E.A.S.T. website, under the heading "Treatment approaches used in eating disorders," it is said that "Prompt diagnosis and assertive treatment led by specialists in eating disorder treatment is essential."

      There are at least two problems with that statement.

      First, many parents have successfully treated a teenager for anorexia nervosa without involving "specialists." This proves that specialist treatment is not "essential."

      Second, it isn't essential for a specialist to "lead" the treatment. An alternative is for parents and professionals to collaborate with one another as equal partners. It is simply not essential in all cases that the professional act as leader, and the parents as followers.

      F.E.A.S.T. might want to reconsider whether its message is truly empowering, or whether, on the other hand, it contributes to a climate of parental dis-empowerment.

      Chris

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    17. Talk with FEAST about FEAST.

      As for me, I not only disagree with you, you disagree with you!

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    18. Laura,
      The F.E.A.S.T. website shows you as a member of the board of directors. That means you have some responsibility for the organization's messages.

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    19. And support those messages 100%.

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  3. PS on AED, good question. AED conferences are paid for by.... sponsorships. Lowering prices for some people would allow more of us to attend, but someone has to pay for it.

    There's also another interesting issue. AED is a professional organization, not an advocate or parent organization. We can attend but it is not designed for us or catering to our needs. There is an argument that professionalizing the field should mean making AED membership and participation something you qualify for, under some sort of standards. I would applaud that, myself. Meanwhile, I'm not sure I want them to treat non-professionals differently, even though it costs me dearly.

    Full disclosure, though, now that I am a private citizen I applied for and was awarded a scholarship to attend AED, one designed for carers and advocates. It doesn't cover all the expenses but really helps make this trip (in which I am speaking on two panels) much more affordable.

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  4. FROM JUNE ALEXANDER:
    Excellent post! High five for saying what many people think, but don’t have the guts to say.

    Makes for interesting contemplation: advocates are generally driven by passion, but there is a fine line between being advocate, activist and exploited.
    Somehow, we need more respect and acknowledgement for the work that advocates and activists do in the ED field. I believe this is starting to happen (for instance the Patient-Carer scholarships at Boston), and certainly in the aims of the PCC. The professionals can’t do it on their own, and neither can we, each is as important as, and needs the other, in taking on our mutual challenge of ED. I think this is starting to be recognised (after your many, many years of hard, hard work to make it happen).

    I would like to see mutually-respectful collaboration in every aspect of patient-healing, caregiving, and treating eating disorders.

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  5. Thanks Laura. Very true. In my case I was going to start the work to build my house this year and will get to it but I also decided that the 5000 usd I'm spending to attend my first international Ed conference in April was more important. :) The fact we put our own money, our own time on top of usually full time jobs at work and full+ time jobs taking care of our kids, and our energy into this without any payment or professional benefit speaks volumes. These moms and dads and carers and survivors do this work because we know we need to push for the national systems and evidence based correct treatment supports that will save our kids and countless other kids lives. We bring energy and skill to the table. We don't get paid and we sometimes get a whole lotta *ish for daring to question. That's ok. That's actually very cool because it means the foundation is being shaken. In this two years of advocacy I've seen more vitriol and weirdness than in my 20 year career as a public health professional working in very complex settings. That's ok. That's cool - it means the system needed shaking up. The fact we receive zero obvious benefits and are not funded by anyone or gaining any financial benefit in any way resource indicates our commitment. I devote about 30+ hours a week to this work. Sometimes more. Luckily I have a flexible work schedule and a supportive child and partner. But you are right there is a cost - and it is also ok. I prefer not having any funding at this time for this work because I don't want us crippled by any group that might want us to behave a certain way. I like the flexibility and possibility of using social media to grow out network and increase people's engagement - it's easy and fast and inspires people. I think your blog reinforces that we don't do this because we want to be rich, or need to get something on a resume. We do this because SOMEONE HAS TO DO IT and our voices and experiences are probably the MOST IMPORTANT of any to inform the field and to influence change. Any group working in ED and not actively seeking out parents/carers is making a critical error - and I'm not talking giving lip service to us, I'm talking several full seats at the table with voting rights and constant and essential input from the field (that's us - we are the field). Again drawing from my experience working in HIV where many programs initially grew without the active decision making and engagement of people living with HIV. Mistake. And that changed. Any research, program implementation, advocacy action, legislation that does not embrace and fully engage with parents and carers is not going to be ethical. Thanks again.

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  6. The costs you mention are exactly the reason I didn't attend a single conference this year. I've missed them, and missed you!

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  7. I'm late to this conversation but want to applaud you for this blog post. I'm a parent who can not afford to go to large conferences year after year or stop working completely to advocate full time; however, I have been able to be an effective advocate at the local level. Think of the impact we can have if everyone did something in their own city, state or country. We can make changes from the top down and the bottom up at the same time. In fact it may take advocacy on both levels to make systemic changes that impact families who don't live in big cities or near large treatment facilities.

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