By Judy Krasna, F.E.A.S.T. Executive Director
I’m going to begin this post with an apology, because I know that it’s a terrifying topic and it may be distressing to read. It’s hard for me to write; however, I believe that informed parents are more powerful, even when the information is difficult to handle.
A few months ago, Dr. Jennifer Gaudiani et al published an article about “terminal anorexia nervosa” in the Journal of Eating Disorders that shook the professional eating disorders community. In this article, the authors set forth clinical characteristics of “terminal anorexia nervosa” and propose not only palliative care for these patients, but also medical aid in dying. These are patients who according to the authors would not medically survive beyond 6 months; and in their words, the goal of this type of medical care is to “ameliorate suffering and honor the life lived.” I suggest reading the article to fully grasp the authors’ position.
This only applies to a small cohort and is certainly not widely applicable to those with anorexia. I can understand where the authors are coming from based on the case studies, even if I don’t agree with them; I believe that the intention is to help people who are in immense pain.
And, with that, I think that the label of “terminal anorexia nervosa” is creating a monster that has the potential to do tremendous harm. I have already seen with my own eyes how some providers are taking “terminal anorexia nervosa” in terrifying directions. Terrifying.
I am grateful that a group of clinicians led by Dr. Angela Guarda, whom I had the privilege to meet with at Johns Hopkins last month while I was visiting the US, came out with their own article in the Journal of Eating Disorders stating that “terminal anorexia nervosa” is a dangerous term and affirming my thoughts on this issue. “Anorexia nervosa is a treatable psychiatric condition for which recovery may be uncertain. We are greatly concerned however regarding implications of applying the label “terminal” to anorexia nervosa and the risk it will lead to unjustified deaths in individuals whose mental illness impairs their capacity to make a reasoned treatment decision.”
Eating disorders are not cancer or heart disease. Risk factors for mortality are uncertain, and it’s hard to know which medical complications are reversible with nutritional restoration. I think it’s important to acknowledge that.
I have found that there is very little black and white when it comes to the complex issues that we face as parents of people with eating disorders. Those who have had to force their children into treatment against their will, either through legal means or through using leverage, have done so with a tremendous weight upon their heart and their conscience. Ultimately, our most critical job as parents is to protect the lives of our children. To most of us, using force to do this is totally foreign, and I can only imagine that it feels terrible, but we do what we need to do. When we get that panicky feeling that the eating disorder is severely compromising our child’s health, we opt for treatment, even if it hasn’t worked before. We do this again and again, because what choice do we have? We are hoping, perhaps against all odds, that treatment will take this time, and that the needle of our child’s recovery will move. And I can understand that from the outside, even to a clinician, what we are doing seems futile. If treatment has failed in the past, why force our loved one into it again?
I have seen with my own eyes that there are people out there living their best lives today who may have qualified for the diagnosis of “terminal anorexia nervosa” during certain points of their illness, and who recovered after decades of suffering with an eating disorder. Many of them can’t pinpoint exactly what changed, what made treatment suddenly effective, what led to the motivation to recover, what moved them away from death and toward life. They are not only alive, but they are living, which is something they would have considered impossible; and yet, here they are.
And that’s why we keep trying, that’s why we force our kids to get help for their eating disorder even when doing so in the past hasn’t produced results. Because where there’s life, there’s hope.
I’m not naïve. I lost my own daughter to an eating disorder. I know that not everyone will recover. I know that the mortality rates remain too high, and the recovery rates remain too low. I know that people with eating disorders and their families suffer. But I can’t bear to read articles about helping people with an eating disorder die when there isn’t enough being done to help them live.
As parents, we see that our highly intelligent children lack insight into their illness and are therefore incapable of making decisions about their own medical care. We see how the egosyntonic nature of eating disorders robs our children of their motivation to recover. We understand that this is part and parcel of an eating disorder. So how is it possible that clinicians who support “terminal anorexia nervosa” are overlooking this in favor of deferring to the wishes of someone whose decision-making capacity about something as enormous as ending their own life is likely impaired? I honestly don’t get it.
To me, hope in my daughter’s recovery, or at the very least in her ability to lead a functional and productive life, kept me going during the most difficult of times. Robbing parents of that hope by smacking a label of “terminal anorexia nervosa” on their child seems incredibly cruel to me, no matter how old they are or how long they have been ill. As parents, we hold hope for our children, who are incapable of doing so for themselves. When you take away our hope, you take away everything, and that negatively impacts our children.
Given my own lived experience, I can appreciate that there may be grey areas when it comes to “severe and enduring eating disorders”, another term that I have serious issues with. But what’s absolutely clear to me is that the ramifications of “terminal anorexia nervosa” are positively terrifying for both parents and for the eating disorder community at large. We cannot let it stand unchallenged.
If anyone in the clinical community wants to have a conversation with me on this subject, I’m here.
Brilliance at the pen of our exec director. Thanks Judy
Wow – I was not aware of this article,
And I do plan to read it. My first thoughts are similar to yours – terrifying! And also perhaps unethical. For example, we do not allow people with other forms of mental illness to make their own decision regarding hospice or assisted suicide. We do not give people with long term drug or alcohol addictions the label ‘terminal drug addiction’…….. even after decades of use and/or many rounds of rehab. We don’t give up on people w/ drug addictions. In fact, we are encouraged to carry Narcan so that we can possibly save the life of a person who has overdosed!! Why should anorexia be treated/ considered any differently??
It is not uncommon to have clinicians (often junior) who have little or no understanding of anorexia nervous arguing against hospital refeeding management of critically malnourished adults with long standing AN when these patients are distressed and saying that the patients should instead receive palliative care. Their response is usually a result of both their own discomfort from witnessing the distress of these patients and marked ignorance of AN. Usually some education and explanation can address their concerns.
Of much greater concern is when clinicians who see themselves as being experts in EDs propose palliative care of individuals with long standing AN when those individuals have never received treatment that prioritises achieving full nutritional restoration as a prerequisite for possibly achieving remission/recovery. Such individuals are often labelled as having Severe and Enduring AN when, in fact, they suffer from severe and enduring lack of appropriate and effective treatment for their AN. Many have not had their AN managed at all!
I have had the unsettling experience of participating in a symposium at an ED conference where clinicians ( usually adult psychiatrists) have put forward palliation approach arguements for patients where they have never sought to even try and achieve adequate nutritional restoration, have never even trialled or considered trialling the use of atypical medications to assist in temporarily decreasing distress and anxiety sufficiently to increase the likelihood of being able to support someone to achieve improved nutritional status in order to increase the likelihood of achieving remission/recovery. All to often an individual with severe and/or long standing AN who is being considered for palliative care is an individual who has received persistently inadequate or ineffective treatment rather than being someone who suffers from AN that is not responsive to optimal care.
The inadequacy of the care of far too many adults and young patients with AN is also contributed to by significant stigma and blaming of the individual who has the misfortune of having AN.
Poor or inadequate treatment of individuals with AN routinely occurs in health systems and services that would never accept such inadequate care for individuals with conditions such as cancer, severe infections or mental health conditions such as psychosis.
Whilst the status quo for care of individuals with AN is so woefully inadequate and accompanied by so much stigma and ignorance in so many settings, it is imperative that the first response to the suggestion of palliative or terminal care should be to assume that adequate evidence based care has not occurred and to put all effort to addressing that deficiency and aim to give someone a real chance of achieving remission. To do otherwise continues to doom individuals who are likely to achieve remission if supported to promptly achieve and maintain optimal nutritional restoration to prolonged distress, dysfunction and high premature morbidity and mortality.
I will no longer recommend Dr. Gaudiani’s book Sick Enough to families or physician colleagues. I concur with Rod’s comments above. Additionally, I have to wonder if the clinician who advocates for suicide as a means to end the suffering of patients with severe anorexia is really not conflating her own suffering with that of the patient’s. For a physician, it is certainly discouraging, to say the least, to try and “fail” to help effect recovery for a patient with long-standing anorexia. Perhaps assisting the patients with severe anorexia with suicide provides a misguided sense of compassion and competence, because it is doing something, quite effective in fact, to relieve suffering. I have to condemn the culture of death and hopelessness which aligns with Dr. Gaudiani’s position on terminal anorexia.
I very much understand where your comment is coming from. I feel the need just to comment that I don’t know Dr. Gaudiani personally but I know that her book has helped people and she herself has an excellent reputation from what I have heard.
I concur. Thank you
I have not read the journal article discussed. My daughter just turned 30 and has suffered with AN for 11 years. This winter she began working with the Guadiani Clinic and I believe if it wasn’t for their understanding and compassionate approach she may have died.
She had been through every program and level of care available, so the point of never being weight restored or not having appropriate treatment was not the case. The term Severe and Enduring Anorexia Nervosa was actually a relief when we became aware of it. It described my daughter’s condition and opened a more specific and nuanced path for her. She had not responded to protocol treatment in a way that was sustainable. I feel having this term opened avenues for her to be treated in an individualized manner which she responded to. She felt understood.
The cancer analogy was also helpful. It helped me to understand that her condition was not a choice. It helped me as her mother and caregiver treat her with a level of respect I hadn’t fully grasped before.
My husband and I could not be more committed to our daughter’s recovery- when we sought support from the Guadiaini Clinic we had tried everything recommended. My daughter was on a path to starving herself to death and with their compassionate care she is alive and seeking recovery.
This is really great to hear, Ann.
Great feedback .
Thank you for posting your remarks about successful treatment at the Gaudiani Clinic. I am saddened that some people have rejected Dr. Gaudiani’s excellent book out of hand. Recently I know that her book came into the hands of a doctor and his wife who were at their wits end and after reading it, they passed the book along to their adult daughter who had long-term anorexia and their daughter, using the information, made a turn around. I am so glad your family member, when treated in an atmosphere of support, got into recovery. I will say more in a moment because there is a population that Judy refers to, that needs a different approach and to understand, one needs to know the difference between palliative care and hospice.
An addendum to my comments above:
To clarify, I have no issue with palliative care per se nor with voluntary assisted dying per se where best care cannot lead to recovery, poor quality of life in terminal illness and severe chronic illness where QoL and function is very pour and quality of life not able to be meaningfully improved.
In illness where awareness and insight are significantly impaired such as in severe AN especially when malnourished as well as situations such as acute psychosis and severe depression, the capacity of an individual to make truly voluntary and rational decisions re ending life or forgoing live saving care is usually minimal or non existent. The onus upon carers, clinicians and health services in such situations becomes to be diligent in pursuing care that optimises the likelihood and promptness of achieving remission/recovery whilst minimising ensuing distress during that care. Such a course of action is indicated not only because of the very real possibility or likelihood of meaningful recovery but also because such care if effectively pursued is very likely to result in marked improvement in insight and awareness such that the individuals capacity to make truly informed decisions re their care and life is substantially improved.
In the end, there may indeed be cases and situations where on going pursuit of remission/recovery is truly futile as well as distressing to the individual. For such a situation to exist presupposes that rigorous care that leads to optimal conditions for remission/recovery has been pursued and achieved. This certainly must have included full nutritional recovery. Only when achieving and maintaining such a state has no response toward recovery can it be concluded that further live saving care may possibly be futile. I have not come across such a case nor seen convincing evidence of such a case. I assume such cases are likely to be exceedingly rare. On the other hand, cases where palliative care has been advocated in the absence of having provided or sought to provide care that optimises recovery likelihood and where nil or inadequate consideration has been made of the markedly impaired capacity for informed consent to forgo life saving care has occurred has been something I am well aware of.
We are (UK task force) preparing a response to an open letter which is circulating in the U.K. from a consultant ED psychiatrist. I wondered if we might quote you in both your responses here, reference to you, unless you would rather anonymity?
I have shared the letter on FB messenger with you, and am happy to hear any thoughts you may have regarding it. Judy is fully aware of the letter.
A key point missing in this terminal labeling is the acknowledgement of; brain healing, its fluidity as an organ, ability to alter/change/heal as an organ (which we’ve seen with severe injuries) and therefore the ability for these severe patients with adequate nutrition and treatment to rise up to a better life! I understand UCSD is successful due to the acknowledgement of the role of the brain, the training of patients and families in this area and ongoing research. Where are the other universities in following this evidence based treatment? Where are the neuro scientists in studying this? Where is the grant funding? I’m SO disappointed in the lack of research and in psychological communities in studying and treating this severe illness as it should be and training of therapists that needs to occur. We’ve seen as parents the polar opposite behaviors of our malnourished/ ill ones who once were pleasers, sweet, high achieving, rational who needed the police called and 24 hour watch and years of structured recovery only for them to return to their authentic selves with even more skills to navigate their renewed life. We must not settle for a terminal labeling!
As Director of The New York Center for Eating Disorders for 50 years, I highly recommend Jennifer Guadiani’s book. We cannot bury our heads in the sand about the reality of “terminal anorexia.” I would like to recommend the book Emilee: The Story of a Girl and Her Family Hijacked by Anorexia by Linda, John, and Emilee Mazur about the family’s unsuccessful struggles to keep their daughter alive. My review of this book will be coming out in the Journal of EDReferral.com in January, 2023.
My concluding sentences: “This book is a testament to a family who tried their very best with imperfect medical care. Hopefully their book will give sustenance to families going through this nightmare, knowing that, sadly, sometimes all the devotion in the world will not be enough to save a loved one. “
I don’t think that anyone is burying their heads in the sand about the reality of people who do not and will not recover. I think, though, that the implications and ramifications of “terminal anorexia” have the potential to lead to terrifying and dangerous places, and as worried parents, it’s our responsibility to sound the alarm.
As a parent who’s teen was treated as ‘terminal’ by a specialist eating disorders service I disagree with you.
This isn’t about burying our heads in the sand, but raising genuine concerns at the reality in such a label WILL play in the wrong hands.
Lack of appropriate treatment resulted in my child’s severe condition including extreme psychosis, and then attempts were made to justify her being left to die.
And when this was prevented palliative planning mooted – again prevented. Stark words I realise but this is the reality of the situation which happened not only to my daughter but also for others.
I have found Jennifer’s book and article greatly helpful and recommended them to others but in this article I believe she failed to consider the very serious ramifications it might incur.
We must be VERY cautious not to enable similar situations where treatment has been left appallingly wanting.
This is the concern.
We are surely seeking to promote progress in understanding of the illness and treatment improvements rather than to provide a tool of justification to cite for continued harm.
I should clarify – book and previous articles, and not “book and article”.
I agree – I do not think personally i will ever label my daughter ‘terminal’, and ‘give up’ on her recovery, and just give palliative care. I will fight to the end of the world for her. (I also agree that believing there is always hope give us hope /strength in the fight, and also give the child hope and chance to know that we will never give up on loving them /fighting for them). As a doctor we know some cancer etc will not go backwards and it is terminal, but anorexia is different in this aspect, i believe there is a small hope even for the worst case, and after brain recover with nutritional recovery, there is a chance the patient will live a healthy life free of anorexia — meaning that no one actually know, ie us doctors (or mom) cannot play God to say this case is ‘terminal’ (this particular case may NOT be terminal, this case MAY recover and live a happy live).
As a parent of a 15 year old child who had been left to slowly starve to the point of extreme emaciation while under specialist eating disorders services treatment and ‘care’ including while inpatient, and then palliative care proposed when her death was prevented by robust advocacy, I thoroughly agree with you Judy, and with Rod McClymont.
I’m truly thankful of the outside professional assistance I received in preventing my daughter’s death at the time.
The pain and trauma of this experience remains with me and I am aware that ours is not an isolated experience. Other families I am aware of have confirmed that End of Life plans have advised to them with teens as well as older people. The lack of appropriate treatment including full nutritional rehabilitation is a common theme in all of their cases.
Creating a ‘terminal anorexia’ label IS creating a monster and now there is an article which WILL be latched onto and cited when services struggle for one reason or another to provide appropriate treatment to promote recovery.
My concern that Pandora’s box has been opened – whether or not the intention is stated as only meant to be applicable to the tiniest fraction of cases…
Thank you Judy for providing this study and your perspective on it.
I’m sorry you lost your daughter to Anorexia but can see that your strength in what you do is well grounded.
The terminal classification is a grey area as it can not really be determined clearly as it can for well understood conditions like cancer.
The MAID is interesting and I think should be given some good consideration.
It is not until you and your loved one are at the precipice after multiple forced admissions for re feeding
and earlier successfully achieving weight restoration using FBT that you can understand what it’s like to be one of the 3 sufferers in the case study.
Our 27 year old daughter is now in her 8th week of palliative care in hospital after home palliative care became too difficult. She has suffered terribly for 14 years. Her quality of life and the immense pain and suffering she endures every day need to be understood before judgement can be passed. As loving and supportive parents we have fought for our daughter’s life.
“Enough is enough” was the summary given by an independent psychiatrist who assessed our family circumstances and our daughter after enduring the best our health system could offer.
The journey for our daughter is not over. We don’t know how she will die. We hope her heart fails while she sleeps. We will likely not be able to sit holding her hand as she dies as was the case for MAID case that was exposed in the study.
Our daughter is yet to give in to pain medication and it will likely only be administered once she is to weak to notice.
She is the happiest she has been for many years with an Advanced Care Directive (DNR) now in place
and is slowly reconnecting with family and friends after many years and letting them see her.
Sadly the palliative nurses are not all on board due to lack of understanding of the condition and she is actually being bullied and tormented by a small number of staff nurses even though she has an assigned agency nurse each night when she needs feeding support.
She wants to come home for the end of her life.
Anyway, this is now our issue to deal with.
The real point of all of this is that our daughter should never have been able to reach this point. The system should have provided a safety net that her family and treatment providers could agree on to keep her at a much healthier state some years back.
If our daughter had taken her life by suicide as many do we wouldn’t be having this discussion.
If she had caring supportive treatment providers in her early hospital admissions, perhaps we wouldn’t be having this discussion.
There needs to be more pathways and caring and accountable treatment providers who will stick with you even when you aren’t seeking treatment. That way you hopefully will return for treatment before it’s too late.
All we’ve seen is uncaring treatment along the lines of …
-It’s our way or it’s nothing
– The beatings shall continue until morale improves
Australia has a lot of room for improvement in treatment for severe and enduring Anorexia
Thank you so much for sharing your tragic story, it provides very important perspective. I agree with you fully that your daughter never should have reached this point, and I am so sorry that she has. My heart goes out to you, your daughter, and your family.
So much in that article that I found myself agreeing with, but also as a mother of an 18 year old who developed anorexia nervosa when she was in year 8 of high school, the article is also deeply worrying and bleak. The prospect of our loved ones developing severe and enduring AN looms heavily for us all and while I am committed to supporting and encouraging my daughter toward recovery, she steadfastly maintains her ambivalence to treatment. I found the article portrayed an alternative to the usual tropes of understanding and treating AN. Highlighting evidence that some people just cannot recover from AN no matter how much expert help they have available to them, how supportive we as parents are, how resourced their community might be, comes almost with a sense of freeing myself from the constant pressure and self-punishment of perhaps never being able to “save my kid”. I have held myself responsible 100% for the treatment of my child’s illness, and of course this includes holding 100% of the guilt for not being able to fix her, and reading such an article has helped in some way to see that no matter how hard we try, how invested we are, how much we love them, sometimes we can’t save them. Sometimes we just have to let them go with dignity and love. The article made clear at the outset that most sufferers do recover from eating disorders and that the “terminal” label be used within strict guidelines. I feel the article put forward options which some severe AN sufferers and their families may find a comfort rather than an argument against any perceived failings of our current treatment protocols.
Thank you Judy for addressing the issues raised by Dr. Jennifer Gaudiani et al in their paper “Terminal Anorexia Nervosa.” I have been following the debate that has ensued. Those papers I have seen are all in the same “camp” so far in that the responders object to the use of the term “terminal” and the practice of MAID. However, and even here people do support the concept of palliative care. The problem with the use of this terminology, is the writers do not distinguish, as does Dr. Gaudiani in her book _Sick Enough_, between palliative care and hospice care.
There is an important difference. Palliative care includes the continuation of the kinds of increased care one receives in residential or inpatient in other words full medical and psychiatric care plus the addition of spiritual support and the removal of an atmosphere of forced treatment – a breather, so to speak. Perhaps the term “respite” care is more applicable. Hospice is entirely different. The patient is provided with comfort care and the amelioration of symptoms.
As many of you know, my daughter who was diagnosed with anorexia subtype bulimia, severe depression, severe generalized anxiety, severe emotional dysregulation, substance abuse (because nothing worked) and ultimately self-diagnosed with being on the autism spectrum died last October after seeking recovery many, many times in residential treatment and hospitalizations for more than 33 years. Her hurdle was, time and time again, overcoming the eating disorder’s determination to bring on behaviors that the staff in each location were unwilling to help her overcome and so she was regarded as unwilling and she was discharged even though many times we were paying for her treatment out of pocket. Twice she gained far more than needed according to the current guidelines. She stayed in one self-pay residential center for six months! but the moment the eating disorder “won”, she quit eating.
She knew that the only way she might continue to live was to seek short term hospitalization with the goal of re-nourishment and weight gain, rest, hydration and spiritual support from the visits from members of the clergy and compassionate social workers. She attempted this so many times but again, as I have discussed before on my blog, she was discharged too soon due to lack of beds and resources including Medicaid coverage in spite of my appeals. In the end, after her final hospitalization during which she wanted to be approved for hospice for she saw no way out, hospice was denied and the care she received while there was substandard. She came home to use her words “more traumatized than when she voluntarily admitted” herself, took matters into her own hands and because of bed sores and malnutrition and refusal to obtain more treatment until it was too late, the bedsores became infected and she died of sepsis and severe pneumonia.
The thing is there are others and their caregivers who need our compassion and support rather than anger and rejection. There indeed are others like my daughter who have what has been termed “intractable” anorexia. Something must be done to set up respite/palliative care for them. Sometimes, some turn around with this 360 degree support and move towards recovery. But others, especially those with multiple co-existing disorders do not. Yet ultimately, unlike my daughter, they should be given the chance to what I call “dying well.”
I applaud the work of Linda and Jack Mazur to create the Emily Connection referred to above. Yes, we all do support the concept of holding on to hope and seeking the best possible care for our children and I know I will continue to do that.
Thank you Jennifer for sharing your very personal story and your perspective on this very complex issue.
Determining ‘capacity to consent’ is seemingly a huge piece of this issue. If the sufferer can’t be forced into treatment because they are deemed to have the capacity to refuse it, it would stand that they can use the same capacity to consent to medical assistance in dying (MAID).
Dr. Gaudiani clearly believed, in the three cases presented, that the patients were capable of consent. I can only imagine it’s a very thorough process, with more than one doctor, to get to the heart-breaking stage of MAID.
I fully understand the argument that it’s a slippery slope to be using MAID for mental health disorders. Perhaps that there’s still no complete consensus in the medical community how to categorize EDs complicates things.
I ache for the warrior parents fighting their child’s ED right now who may hear ‘terminal anorexia’ and initially think that could be their child. But I think the criteria of over age 30, intense intervention tried and failed, and capacity to consent, are clearly stated.
After reading the report, I felt the three cases were quite extreme and painful, almost 20 years of suffering for each person, and their families. I would hate for those families to think for one second that they didn’t do enough or gave up on their child.
I agree with you, Jane, I would also hate for the families in the case study to think that they didn’t do enough. They are all extremely brave and I can only imagine how deeply they loved their children. This is clearly a nuanced issue with many considerations.
Thank you Jane for your thoughtful comments about the journal article by Dr. Gaudiani et al.
I am 31 y/o and have been suffering with anorexia since I was seven. Reading Dr. Gaudiani‘s article was profoundly difficult for me, as I technically meet criteria for terminal AN. If I stopped eating entirely, I would probably pass away within a few months… if not a few weeks. This disorder has ravaged my body.
Moreover, I have faced very intense bouts of depression over the years and have attempted to take my life a couple of times.
And yet, after years of therapy (multiple levels of care), the right cocktail of psychiatric medications, support from providers who refused to give up on me, and a lot of hard work on my end, the suicidal ideation I faced for so long finally lifted… this was only a year ago. Had a read this article a few months prior to this breakthrough, I might have been attracted to the idea of obtaining MAID… Dr. Gaudiani probably would not have questioned it, had she been overseeing my care. This scares me… my will to live is incredibly strong now. I believe that profound change is possible, as I am living it. I am also enduring pretty significant physical suffering as a result of decades of illness. It is difficult to envision life as a “recovered” person, as my brain was literally wired with this illness…
I wish I had some sort of answer here… I only have these reflections. Eating disorders are clearly wrought with complexity. All I know is that I am grateful to wake up every day given what I have been through. And I never imagined myself being in this place… I am on the verge of losing yet another friend of mine to ED… I wish I could bring him along with me… I wish I knew how. All I know is that I am not going to give up. and I never thought that I would be the sort of person to speak those words…
I’d also like to say that my heart goes out to all of the parents on this thread who have lost children… It’s unfathomable heartbreak. I have seen it among the relatives of dear friends.
Unfortunately, I do not have much of a relationship with my biological family members. Much of my eating disorder is rooted in complex/developmental trauma. Still, my will to live is stronger than ever. The fact that I’m still alive gives me a sense of purpose. I can’t help but think that if it is possible for me, it is possible for others too… again, no answers here… Just a lot of questions… more than I can write…
I am looking into this stage of Anorexia Nervosa, because I’m sure I was close to it. I had anorexia nervosa, anorexia athletica and orthorexia for only about a year, but the terror of inability to sit down, walk, stay still haunted me. I always ran, jumped around, did all the chores in the house, when I’d walk my dog, I’d run with her until she physically couldn’t run with me anymore. I was scared of tea in fear that it has calories, I thought of million of ways to avoid eating food. This was all under the pressure of my mom and my medical team, I had to follow eating plans, else they’d put me on a tube. I was on this line between the hospital and this fake recovery in which I didn’t believe. I was 14, I am currently 15, and I may not be “old enough” or “sick for long enough”, but I was sick. I was sick.
Now I’m in active recovery, my recovery began in one night, and since that I managed to gain back a significant amount of weight, my fear foods were gone, I wasn’t under any medical pressure. My recovery seemed like a dream come true, but it’s the maintenance of this recovery that is super challenging. My mindset still somehow revolves around calories, my weight, and how I look. When I have a choice between two meals, my mind automatically calculates calories and fats, sugars in each meal and I choose the meal with less calories, even if it’s the meal I don’t want. This is my current challenge, to change this “default” way of thinking, to stop thinking about how my old jeans don’t fit around my waist as loosely as it used to. Currently I’m preparing for TedTalk with the support of my school, family, and some part of my city, because I’m not afraid to admit I once believed that losing 2 pounds off my waist was more important to food, than death.
“My 41 year old daughter sent me Dr Gaudiani’s article a few days before she died of terminal anorexia. And I use that term with confidence and certainty. I had always thought of her disease as severe but upon reading the word terminal, the past almost 30 years of my daughter’s pain and suffering and ultimate death made some sense to me and I applaud Dr Gaudiani for her courageous and brave ideas. No, it’s not cancer but anorexia is still physically and mentally destroying a body and a mind due to lack of nutrition and in my daughter’s case she also added in egregious compulsive exercise. Why the stigma?
My daughter worked as a psychotherapist up until 2 weeks before her death. So I take umbrage at anyone who would say that my daughter was not competent to make a decision regarding her own life or death. I spent the last 4 weeks of her life with her – day in and day out – and although a part of her was irreparably damaged physically and mentally from her anorexia there still remained a very aware, funny, brilliant, women who was 100% capable of making the decision to receive palliative care, hospice care, or MAID because she knew this disease was killing her. However because anorexia is a mental illness even though her physical deterioration was killing her, there was nothing available for us. Her body was breaking down – bit by bit – and it was torture for her and for me.
My daughter became ill at age 12 and after dozens of treatment facilities all across the country, as well as the first person in Dr Roland Griffith’s psilocybin study, add in dozens of ketamine infusions – she entered her last facility with a blood sugar of 18. She had no feeling in her body, could barely walk and was sent by air ambulance to Denver Acute where she eventually put on enough weight to enter a treatment facility. After spending almost 5 months there she came home and without missing a beat lost every pound she gained. This past year was excruciating for her, her son, husband and our family so when she lapsed back into the condition necessary to enter treatment again – she refused. I tried to save her life every day but she was done. Yes, there is such a disease as terminal anorexia.
This disease has ravaged 4 generations of my family and I’ve been in touch with the remarkable Cynthia Bulk who I see is on your Board of Advisors. Her genetic research holds out the possibility of a cure and I ask that all families suffering with this heinous parasitic disease to please take part in her EDGI study.
My daughter’s son was 6 years old when she died and during those years he saw his mother leave for treatment 3 times for 5-6 months each. She tried so hard – to put it mildly – to recover for him but in the end the disease won and robbed her of a life that should have been. Two masters degrees, a Phd, a consummate artist and musician, and I could go on listing her abilities – a great loss. Anorexia is the only thing she tried to conquer and couldn’t master.
I strongly believe MAID, hospice or palliative care should not be administered to anyone under the age of 40 and that all attempts to save the lives of those suffering with anorexia must be made. I know that “recovery” is possible. But there is no cure or recovery for terminal anorexia and although the treatment facilities do an amazing job of keeping our kids alive – it’s not a cure or recovery for those with a terminal form of the disease.
So I would lobby for the word terminal to NOT be expunged from the ED language but explained to families that yes this can happen to your child but it is rare – just like telling patients of any disease the possible prognosis. Also, for me and for parents like myself who know without a doubt there was no way forward, the word terminal made a profound difference in coping with her death and it speaks the truth. The word terminal isn’t scary – anorexia can be terminal just like any other horrible disease and needs to treated with the same respect by offering these human beings hospice, palliative and MAID when all else fails.
I will add – this is the second anorexia death in our family.
Not only do I grieve for the 30 years she lived with her illness but now I’m in pain knowing that she had to die from a terminal illness of which there is no cure and no palliative or hospice care. My heart goes out to all the men and women suffering from anorexia and it’s offshoots and also to their families because being the mother of a daughter with anorexia and all its accompanying traits has defined and continues to define the most important part of my life.
I’m profoundly grateful she’s at peace but I will miss her and grieve for her the rest of my life. And of great importance – thank you Dr Gaudiani for putting the label terminal on my daughter’s anorexia that gave me some peace.”