Join the Conversation on
139 people
0 stories
8 posts
  • About Diabulimia
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in Diabulimia
    Community Voices

    New Beginnings

    I’ve been struggling with this for about two years now. I’m in the process of finding someone who can help with my mental health. All I want is to have control again. I want to have a family one day. But how are they going to help me if they don’t understand what it is I’m going through? Are there therapists specific to diabulemia? How do I find the one right for me?

    1 person is talking about this
    Dez Nelson
    Dez Nelson @naac_hq

    The Problem With the CDC's 2016 Opioid Guidelines

    First, let’s define our terms. What exactly is “evidence-based medicine” or EBM? The Evidence-Based Medicine Working Group communicated in the Journal of the American Medical Association (JAMA) that EBM “de-emphasizes intuition, unsystematic clinical experience, and pathophysiologic rationale as sufficient grounds for clinical decision making and stresses the examination of evidence from clinical research.” Now, let’s dig in. For those of you who may be unaware, in 2016 the Centers for Disease Control (CDC) published a guideline for prescribing analgesics for chronic pain. The guideline was ostensibly only meant for primary care physicians but in the wake of all of the hysteria surrounding analgesic medications, millions of patients have been forced to lower their dose to 50 to 90 milligrams based on the unscientific “Morphine Milligram Equivalent” or MME, while many others have been forced off of analgesics entirely with devastating consequences. What is the Morphine Milligram Equivalent (MME)? One of the linchpins of the CDC’s controversial guideline is the MME, but what is it? The MME is essentially a conversion chart that was created to guide providers on the different “strengths” of certain analgesics compared with morphine. Only, as many physicians and scientists have pointed out, CDC did not take bioavailability, half-life and metabolism, drug to drug interactions, or genetics into account when they developed the MME. As Dr. Josh Bloom Ph.D., the Director of Chemical and Pharmaceutical Science at the American Council on Science & Health (ACSH), points out: “Although the conversion table seems to be straightforward enough, it is based on an assumption that all opioids behave similarly in the body. But this assumption could not be less accurate. Once we see the profound differences in the properties of the drugs and the difference between individuals who take them it becomes clear that not only is the CDC chart flawed, but the MME is little more than a random number.” Dr. Bloom also made it clear that “flawed science yields meaningless results,” and as I pointed out in “Providers Not Allowed Fully Autonomous Decision Making,” this is exactly why bureaucrats should not be developing “best practices” or guidelines for physicians for nationwide implementation and calling it “science.” I strongly encourage all of you to read “Opioid Policies Based On Morphine Milligram Equivalents Are Automatically Flawed” because it gives an absolutely incredible explanation for why the MME is unscientific in terms most will understand via simple analogies. Methods Used During Development Phase Cast Doubts on Guidelines’ Validity Richard Lawhern, Ph.D. wrote in August 2016 in the National Pain Report that he had located some of the “research” that was used to justify and develop the guideline and provides some very compelling arguments which cast doubt on the methods used in the development phase: “Deborah Dowell, a Senior Medical Advisor in the CDC Division of Unintentional Injury Prevention, wrote a briefing of the Consultants Working Group’s major recommendations that includes a summary chart labeled ‘Relationship of prescribed opioid dose in MME and overdose risk.'” Image Taken from National Pain Report Dr. Lawhern goes on to point out that in this chart: “…four published studies are compared. Apart from the unexplained protocols behind those studies, the results are internally inconsistent and wildly at variance between the four. One study of reveals a leveling off of overdose risk at 50 mg Morphine Milligram Equivalent Daily Dose, while the others claim a significant further increase in risk at 100 MME or higher.What we don’t know is HOW MUCH higher the dose increase was in each of the four studies, OR on which opioids.” Dr. Lawhern also wrote in ACSH in March 2017 in regard to both Congress mandating use of the Guideline by the Department of Veterans Affairs (VA), and the Centers for Medicare & Medicaid Services (CMS) seeking to mandate it for insurance reimbursement, that this was happening “despite the fact that the methodology of MMED is itself considered a meaningless medical mythology by many experts in the field.” He further states that: A deceptive bureaucratic maze adds deep insult and possibly criminal intent to this obvious injury. Many of the core assumptions of the CDC guidelines are supported by only the weakest medical evidence — and others are clearly contradicted by the evidence. Medical professionals have published sharp criticisms of the CDC guideline and of the anti-opioid biases of consultants who wrote the document. A recent paper in Pain Medicine [ref: Pain Med (2016) 17 (11): 2036–2046] offers analysis that shows the writers of the Guideline deliberately distorted the evidence they gathered.CDC consultants performed a literature review on the effectiveness and risks of three classes of treatments for severe chronic pain: opioids, non-opioid medicines like Tylenol, and behavioral therapies like rational cognitive therapy. Based on this review, they declared that there is very little evidence that opioids work for pain over long periods of time. But they neglected to inform readers that they had rejected any study of opioid medications that hadn’t lasted at least a year, then declaring that there was no proof that opioids are effective over the long term. But they did NOT reject studies of non-opioid medications or behavioral therapies that were similarly short.As the Pain Medicine paper states, ‘To dismiss trials as “inadequate” if their observation period is a year or less is inconsistent with current regulatory standards… Considering only duration of active treatment in efficacy or effectiveness trials, published evidence is no stronger for any major drug category or behavioral therapy than for opioids.’This didn’t keep the writers of the CDC Guideline from recommending that non-opioid treatments be favored over opioids, despite lack of evidence that they work. Nor did it keep the writers from exaggerating opioid risks — using the term ‘overdose’ no less than 150 times in their biased and unscientific practice standard.” “Evidence-Based” Recommendations Deviate Significantly from Established Methodology According to Jeffrey Fudin, Mena Raouf, Erica L. Wegrzyn, and Michael E. Schatman Ph.D.: ‘The CDC used the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework for producing evidence-based recommendations; however, the guidelines deviated significantly from the established GRADE methodology without associated justification. There is a significant mismatch in the strength of the recommendations made in the guidelines and the supporting evidence. When considering that all recommendations were based on level 3 or 4 evidence yet eleven of the recommendations were assigned grade A, this is a major deviation from the National Clearing House guidelines on levels of evidence and grades of recommendations.” What Is The GRADE Framework? The Advisory Committee on Immunization Practices (ACIP) “develops recommendations on how to use vaccines to control disease in the United States…Once the ACIP recommendations have been reviewed and approved by the CDC Director and the U.S. Department of Health and Human Services, they are published in CDC’s Morbidity and Mortality Weekly Report (MMWR).” CDC also says that “the method has been adapted,” unfortunately, as Fudin et al. communicated, they did not provide justification. It’s also unclear whether a framework developed specifically for vaccines is appropriate for application elsewhere, especially considering the way in which it was “adapted.” The CDC Consultants That Performed the Literature Review The CDC got quite a bit of help implementing their guideline. One name you’ll want to keep in mind is Michael Von Korff. For those who have never heard of this individual, Michael Von Korff is a Doctor of Science who specializes in research and he is also a sitting Board member (Vice President-Scientific Affairs) for Physicians for Responsible Opioid Prescribing or PROP. PROP has been an extremely controversial actor in how the narrative about the overdose crisis unfolded in the public discourse, as well as behind the scenes with federal agencies such as the CDC and the FDA. PROP’s attempts at public “education” on opioid analgesics that now dominate the narrative in regard to the crisis have been harmful at best and their ideology relating to opioid analgesics, extreme. I will provide examples of the extreme ideological bias that exists at PROP in future articles, however, Von Korff also served as a consultant to Abt Associates, Inc. and the project team from Abt Associates served as a contractor to the CDC for guideline implementation. Abt Associates has been invaluable to the CDC in regards to both the development and implementation of the guideline and “quality improvement” (QI) metrics. Those who served as consultants to the Abt Associates project team for CDC’s quality improvement initiative are, as far as I can discern, predominantly from PROP, Kaiser Permanente Washington Health Research Institute, and the Oregon Pain Guidance Group, all of which have demonstrated an extreme bias against opioid analgesics. The CDC’s conception of morphine equivalents was, again, “adapted” from an idea which was first communicated in “De-facto Long-term Opioid Therapy for Chronic Non-Cancer Pain” which we will discuss in-depth in the near future. What is the significance of this paper? Well, Michael Von Korff was one of the authors of that paper and it may be interesting to note that the Center for Health Studies, Group Health Cooperative (Seattle Washington), Kaiser Permanente, and the University of Washington School of Medicine are the three dominant associations for the authors of that paper, Von Korff and Joseph O. Merrill included. The Washington State Guideline, The CDC Guideline and Extreme Bias Von Korff, among others, was also an important voice that was leveraged in justifying the Interagency Guideline on Prescribing Opioids for Pain, the Washington state guideline for prescribing which is one of the most radical in the country and developed by the Washington State Agency Medical Directors’ Group (AMDG). The development of this guideline began in 2007, long before the CDC Guideline, and it has had catastrophic results. Those results should have been studied in-depth before the CDC ever considered releasing a similar federal guideline, but that didn’t happen. It’s interesting that both the Washington guideline, and the CDC guideline, mention the fact that genetic factors and incomplete cross-tolerance are important considerations when calculating MME for dose reduction, taper, or switching analgesic medications, but they don’t seem to see its significance when it comes to calculating this for a patient that does not respond well to a 50 to 90 mg daily “MME” (or less). In regard to the Morphine Equivalent Dose Table, AMDG says, “all conversions between opioids are estimates generally based on equianalgesic dose. Patient variability in response to different opioids can be large, due primarily to genetic factors and incomplete cross-tolerance. It is recommended that, after calculating the appropriate conversion dose, it be reduced by 25–50% to assure patient safety.” Why did the CDC seek out the advice of radically biased addiction psychiatrists and others, who are not trained in pain medicine, instead of actual pain medicine experts; especially considering that some may have had some glaring conflicts of interest? As Dr. Lawhern pointed out, there could be criminal intent at play here and that possibility needs to be deeply explored, and swiftly. Dissent Against Unscientific Guideline by Professionals Has Been Ongoing I must stress the importance of remembering that the MME is not based on any current scientific understanding. It’s an arbitrary dosing guideline that doesn’t translate well in the real world when it comes to adequate analgesia for individual patients. It’s a one size fits all approach and human bodies unfortunately just aren’t that simplistic. If they were, the guidelines’ implementation, despite dissent from experts, wouldn’t be so egregious and some news articles were already exploring this dissent on a wider scale less than a year after the guideline was published. Back in January of 2017, The Boston Globe published an article about how doctors are cutting patients off of analgesic medications, even if it harms them, and communicated that their survey found that: “More than half of doctors across America are curtailing opioid prescriptions, and nearly 1 in 10 have stopped prescribing the drugs, according to a new nationwide online survey. But even as physicians retreat from opioids, some seem to have misgivings: More than one-third of the respondents said the reduction in prescribing has hurt patients with chronic pain.” The article goes on to state that “the percentage who believed patients had been hurt by reductions in prescribing differed little among specialties: 36 percent of all specialties, 38 percent of family doctors, and 34 percent of internists” and this was back in early 2017. It’s difficult to say how much worse the problem has become subsequently, how many physicians in all specialties perceive these changes currently, or how many patients have been harmed (or even “saved”) by the guidelines in the wake of its implementation; but it may be prudent for the public to begin more aggressively seeking answers to these questions. There are currently no metrics to track patient outcomes one way or the other that are patient-reported, or really even otherwise, and that’s a problem. The reductions in prescriptions are touted often as some kind of evidence of the guidelines’ “success,” but that is not the only metric that should be considered when deciding on a treatment option for living human beings who are dealing with serious health problems. Would we do this for the diabetic patient that requires insulin? While insulin abuse is not as common as other forms of substance abuse, insulin can and has been abused by some diabetic patients with often fatal consequences. The National Eating Disorders Association says, “Diabulimia is a media-coined term that refers to an eating disorder in a person with diabetes, typically type I diabetes, wherein the person purposefully restricts insulin in order to lose weight. Some medical professionals use the term ED-DMT1, Eating Disorder–Diabetes Mellitus Type 1, which is used to refer to any type of eating disorder comorbid with type 1 diabetes.” “The relation between substance misuse and poor compliance with treatment is well established in both general medicine and psychiatry. Although young patients with insulin dependent diabetes mellitus may have lower rates of comorbid substance misuse, there is direct evidence that their compliance with treatment is poor. Patients with insulin dependent diabetes mellitus have an increased risk of developing a psychiatric disorder, particularly in the early course of their illness, and treating the psychiatric disorder improves glycaemic control.” If federal agencies and the media told the truth, they would make it clear that prescriptions are at an all-time low while overdoses are at an all-time high (and expected to climb), and yet, they still claim that most overdoses are the result of “prescription opioids”; and they continue to tout the “success” of their guideline and dare to call it “evidence-based.” After being exposed to some of the more moderate experts who have loudly dissented to the implementation of the unscientific guideline, do you believe it’s “evidence-based” or is it possible there is another agenda at play here? Conclusion This trend in federal initiatives that seek to apply these types of one size fits all approaches may be due to the shift from individualized care to “population health,” which is a focus of current public health practice. Unfortunately, this type of approach has simply been catastrophic. It’s not yet clear exactly how damaging these initiatives have been to human health on a mass scale because appropriate tracking and control systems were never put in place before (or after) the execution of these initiatives, however, we will discuss some small scale studies that are beginning to shed light on just how dangerous these policies have been for patients in the future. One thing is absolutely clear, this is not how any crisis should be managed and anyone who understands disaster planning knows that one wrong decision has the potential to create further assaultive crises in the midst of an already existent crisis, and that’s exactly what’s happened. The response to one crisis has created another crisis that affects a far greater number of people than the original problem that health agencies attempted to “remediate.” Physicians, scientists and other important stakeholders have repeatedly cautioned, written and admonished the CDC, they have advocated tirelessly in an attempt to mitigate adverse outcomes due to the guideline and those warnings were ignored; every time. CDC barreled forward despite an avalanche of dissent from professionals and patients and now, we’re beginning to see the fruits of that disregard. I’ve already begun to dismantle the claim that the guideline fosters increased ‘safety’ for patients. Please see “Policies Fail on Small Scale, Yet Forced Nationally” for an in-depth look at the harms that have been foisted on the American people.

    How the Psychological Effects of Diabetes Can Lead to Diabulimia

    The psychological effects of carbs and carb counting on a type 1 has always been something I find fascinating. We as people with diabetes are taught to obsess about food from a young age — the makeup, the amount, and most importantly, the carbs. What does all this do to our psyche? Is it possible to obsess this way and still keep a healthy relationship with food? Does the fact that I was learning carb counting while others my age were learning kick ball effect my current self-image? I’ve grown to find that most PWD that I meet in the clinic or “in the wild” have an odd relationship with food, myself included. What does this mean? Well honestly, I don’t completely know. The reason I say that it’s an “odd” relationship is because I can’t actually pinpoint it and it varies so much from person to person. For many, this relationship has turned into an obsession with weight. For some, it turns into binge eating, purging, anorexia, or bulimia. For me, I just don’t really like food. I think it’s because of all the work that goes into my diabetes when I eat. I have to count my carbs, bolus 15 minutes early, then deal with the fact that I may have under or overestimated the carbs. Should I have used a combo bolus? Will I be exercising in the next four hours? It’s just all so complicated and frankly, it’s annoying. Today, I want to talk about an eating disorder that I see all too often: diabulimia. Diabulimia is a very dangerous eating disorder in which PWD withhold insulin to lose weight. Insulin is required to bring glucose from the bloodstream into the cells and when insulin is withheld, glucose accumulates in the blood. High BGs result, causing the kidneys to kick into overdrive (frequent urination). Because glucose cannot get into the cells, the body starves. This leads to quick weight loss with very severe consequences; diabetic ketoacidosis, kidney failure, heart attack, stroke, blindness, gastroparesis, and death. According to the American Diabetes Association, as many as one third of type 1 women have done or will do this in their lifetime. I’m not sure of the stats for men, but I know diabulimia is prominent with them as well. If this is so prevalent in diabetes management, why is there so little access to treatment? People with diabulimia are typically treated similarly to those with other eating disorders, but this isn’t always successful. Psychiatrist/psychologists specializing in diabulimia are few and far between. For those who are willing to share, what have you done to cope with this disease?

    Community Voices

    What I Want People To Know About Diabulimia

    If you heard the word #Diabulimia, chances are that you wouldn’t know what it means. The truth is, up until a few days ago, I didn’t even know what it meant….but I did know someone that struggled with the condition.

    Sarah was my husband’s cousin; a devoted and loving mother, daughter, granddaughter, niece, and friend. She was a hard-worker and was selfless in her acts of helping those around her, especially her loving family. Sarah’s relationship with her son was the most important to her; she would constantly talk about him and express her love for him. She had a big heart and on the outside, you may believe that she had it together.Sarah suffered from a condition known as diabulimia. diabulimia is an eating disorder which may affect those with Type 1 #Diabetes and is the reduction of insulin intake to lose weight. Sarah was diagnosed with Type 1 Diabetes when she was in 6th grade. During this time, she became incredibly self-conscious with her weight and never felt thin enough. She went on a massive diet, took diet pills, laxatives and obsessive exercising; she lost over 100 pounds but still didn’t feel good enough. By the time that she was 16, she learned how to omit her insulin as a way to stay thin; yet no matter how thin she became, she still didn’t feel good enough. She had so many people that loved her and would endlessly tell her how wonderful she was. She was selfless and did so much for the ones that she cared about. If only she would have taken care of herself.Within two years, the complications soon begun. Her once thick head of hair was falling out and turning brittle; and downy hair started to appear on her body. Although she was losing the weight and in a great deal of turmoil, Sarah kept a smile on her face and continued to do for others. If you were an outsider looking in, you would never expect what she was going through, however, her close family and friends had speculations and it killed them to watch this vivacious young lady wither away to a shell of a person. Despite her struggles, Sarah’s passion was to help and care for others. Sarah was a daycare worker for several years at her Grandmother’s home daycare; she loved all of her kids, and they sure loved her. Within the past year, Sarah also got a job at a nursing home as a LPN and fell in love with it. She devoted herself to her patients and working long hours to give her son the life that he deserved.Unfortunately, Sarah lost her battle on Christmas Eve 2017. Her loss came as a cruel shock to everyone that came to know and love her, and her impact she left in this world is one that cannot be easily forgotten.

    Sarah is deeply missed and this article isn’t even skimming the surface of how much she was loved. She left behind a loving family that is lost without her. She left behind a son that now, can only cling to the memories and photographs. She was so loved and like me, I know there are many people out there wondering: “I hope she knew how special she was.”

    I didn’t know anything about until I talked to Sarah’s mother and also researched about it. I was shocked to learn how common this condition is. According to www.diabulimiahelpline.org, affects over 30 percent of diabetic women between the ages of 15 and 30 and studies show that Type 1 diabetics are two and a half times more likely to develop an eating disorder than other women.

    The fact that a lot of people don’t even know this is a possible condition, including myself, astounds me. I want people to know that is real and to be aware of it.

    If you or someone you know is suffering from , there IS help out there. Please reach out to the 24 hour hotline at: (425) 985-3635.

    1 person is talking about this
    Community Voices

    6 years of undiognosed suffering

    Hello there. My name is beth and this is my story. I’ve struggled with #Diabulimia for 7 years (since I was 14) but unfortunately due to lack of awareness & diabulimia not yet being an official diagnosis I struggled to receive help. There was simply no help available and nobody even considered my condition to be an eating disorder so I went on silently suffering! My Hba1c was consistently high (off the scale) I was eating & binging regularly but omitting all of my insulin except for my long acting one. In recent months I have found out I have nerve damage in my legs, and retinopathy, maculopathy and diabetic macula Edema in both eyes causing me to loose a lot of vision. This is all due to years of diabulimia, a condition which is still not recognised as an eating disorder! This illness is extremely dangerous and it makes me so sad that so many people suffer and are suffering in silence. I am now receiving inpatient treatment for my however the term is still dismissed and I’m classed as bulimic so help is still very minimal (non existent for ). If anything can come out of my story, I want to raise awareness and let people know they are not alone with this illness. I hope that one day soon will be officially recognised as an and more help will be available! Because without help the results can be fatal. #EatingDisorders alone are serious illnesses but when you combine a #ChronicIllness such as type 1 #Diabetes with an the prognosis can be deadly! Please share my story to help raise awareness and help support the official diagnoses of ! X

    2 people are talking about this
    Claire Kearns

    The Connection Between Diabetes and Depression

    Depression: another big D word and largely silent, invisible illness. Standing alone it can be emotionally devastating and incredibly difficult to cope with. Add diabetes, and depression is often given further means to fester and grow quite dramatically, with stable blood sugar control often overlooked or given less attention than it needs to have. Most recent studies show that depression is twice more commonly found in individuals that have diabetes than those without. But why? And how do we address it? Uncontrolled diabetes can be problematic enough to treat, especially with many health practitioners not addressing the emotional roots of the diagnosis at all. With depression thrown into the mix the proactive approach a person with diabetes needs to take can fall easily by the wayside, with self-care becoming a burden. Of course, such despondency can often be a part of someone experiencing diabetes with an eating disorder as well. Depression, diabetes and an eating disorder make up a dangerous mix whereby each condition can be fueled by the others, maintaining a cycle that is difficult to break out of. Despite the high numbers of people with diabetes who also experience depression, any information available upon diagnosis is sorely lacking. You are typically given all the education that you need in relation to what insulin to take, what to do in cases of hypo or hyperglycaemia and which snacks are better than others, but what about the emotional issues? It seems quite rare that any insight or support is provided to acknowledge what coping with diabetes can do to your head. Undoubtedly the realization that type-one-diabetes is an incurable, unrelenting illness which will be with you for life can be difficult to accept at diagnosis. Then there’s the possible perceived alienation from peers, the confusing and unanswerable question of “Why me?” the loneliness and isolation of it all. Furthermore, that urge to be free and able to do everything your friends can do without having to stop and test your blood/inject/eat every few hours. Such yearning may lead to a sense of denial and rejection of acceptance: what blind-sighted health professionals can term “non-compliance.” It can also be hugely challenging to deal with the influence of mixed media messages that can spread ignorance to the public and the barrage of unhelpful, intrusive comments that may come from the people around you. Nobody seems to tell you about any of this in the beginning. Of course, this isn’t always the case, some people do have good accounts of the process, where the right resources are offered and they feel supported. However, for every success story, there seems to be several other cases whereby a newly diagnosed person with diabetes is given a few leaflets, a clinic appointment in four months, and is then sent on their way. As one site says: “Everyone reacts differently when they hear the news that they have diabetes. You may be initially overwhelmed, shocked, afraid, angry and anxious. Some people go through a stage very similar to mourning – as though they are grieving for lost health.” Diabetes can also become a tool for self-harm, with suicidal behaviors complicating the issue even further. As well as the highly dangerous practice of omitting or reducing insulin which can be largely associated with an eating disorder, someone struggling with depression may misuse their medication in other harmful ways. Depression can jump on diabetes as a way of pushing the boundaries of life to a desperate and potentially lethal knife edge. Patience Blystone spoke of how at the height of her illness, depression provided her with yet another tool to hurt herself with: “Along with my eating disorder being shown through poor diabetes control, my depression has done the same… Whether it’s me screaming out for help or to be noticed, punishing myself because I feel I deserve that, or just neglect because I can’t muster the energy to take care of my body.” Talking about how she is now able to manage her depression more appropriately through an on-going process of recovery, Patience said: “I’ve coped with it by finding out what makes me depressed. I am a huge perfectionist, have terrible anxiety and in general am very pessimistic towards my own life. By realizing that setbacks won’t ruin my life or make people dislike me, I’ve managed to always feel the need to be perfect. I can tell myself ‘Well if this goes wrong I have these alternatives’ and move on. My anxiety is a daily battle of tiny bouts of courage, tears, yoga, and just pushing past my comfort zone. And the being negative is just a day by day thing. I find if I enjoy the small things and try not to focus on the hard problems for too long it lessens.” Lucy O’Meara also believes that diabetes has played a role in the development of her depression. She talks of how the condition “majorly decreases (her) motivation which makes relapsing more likely and diabetes control go out the window.” Kayleigh Lovell, who was diagnosed with both type-one-diabetes at the age of 6, believes her own severe depression started gathering roots at the same age. “I find basic tasks like brushing my teeth or getting dressed almost impossible, so taking care of my health is difficult. My eating disorder, OCD and depression have always prevented me from making my health a priority.” she says. This is not to say that advances in treatment settings are not happening. Recent years have seen the link between psychology and diabetes being considered a lot more has been previously seen. Reports on the association of disordered eating have played a small part in this. Most significantly the National Institute of Clinical Excellence (NICE) released new guidelines which outline the importance of psychological support for children and young people with diabetes. They also updated their existing recommendations concerning this area in relation to adults. But we need to continue making a noise.  Progress is being made in ripples, but we need a crashing wave. If you are reading this and struggling with depression, please speak out and don’t be afraid.  There is nothing whatsoever to be ashamed of.  Vocalize your distress, shout about it if you must. Go to your GP, diabetic nurse, consultant or even a friend who can advocate on your behalf because you shouldn’t have to suffer alone. Nobody should have to suffer alone or in silence. You deserve to be heard. This piece originally appeared on the website for charity Diabetics With Eating Disorders (DWED). We want to hear your story. Become a Mighty contributor here . Thinkstock photo via Marjan_Apostolovic

    Claire Kearns

    How to Support Someone Struggling With Diabulimia

    Knowing how to talk to someone struggling with a serious mental illness like an eating disorder or chronic illness like type 1 diabetes can sometimes seem like a minefield for family and friends. Both conditions are regarded as invisible illnesses and are often misunderstood. Innocent comments can quite easily be taken the wrong way entirely. My eating disorder will reframe and misconstrue anything it can potentially collude with and use against me. It feels like you somehow become psychic and can read minds. It’s often the case I know I am being duped but I’ll gladly fall head first down the rabbit hole. That said, I’ve written some gentle suggestions of what not to say to someone with an eating disorder, type 1 diabetes or a comorbidity of the two. Mostly they are flippant remarks that can’t be caught until they are said out loud and then realization hits. Sometimes it can be ignorance. Sometimes it can be frustration and anger and shock tactics, none of which work, but all of which are born from desperation. I hope this might be of use to individuals in a supporting position for someone who is ill. Often the way our minds twist things can make absolutely no sense. I’ve devised these pointers not just through my own experience but with the experiences of other people I know with eating disorders, my close friends and members of online communities. 1. Try to avoid diet talk. Yes, sadly it’s normal. It seems inescapable. Women in coffee shops opting for “skinny” drinks because they think they need to lose a few pounds or gaggles of young girls asking “do I look fat in this?” as they stand in front of the changing room mirrors. But making an effort not to talk directly about weight loss and diets to someone with an eating disorder is important. For example, I have enough of this kind of talk going on in my head to contend with. You should never ask someone with an eating disorder for diet tips. Actually, I believe you should never ask anyone for reasons behind their weight loss or gain at all. 2. Avoid body-focused compliments. “You look so much better. Your face is so much fuller!” OK, so we might know these are intended as compliments because they show compassion and concern from someone who is relieved to see you looking healthier. But again, someone with an eating disorder can manipulate those words automatically. We might hear “you look fat” or “you must not be ill anymore.” “But you don’t look sick” is another jarring comment that can often prompt the automatic competitive thought, “Well, I’ll show you what sick is.” Outside appearance can also be deceptive. A person with diabulimia m ay present as OK on the outside yet be in acute diabetic ketoacidosis (DKA) and in need of emergency assistance. Ultimately, any kind of commentary relating to appearance around someone with an eating disorder should be vetoed wherever possible. Positive or negative, it can be taken the wrong way. 3. Educate yourself on type 1 diabetes and eating disorders. It can be really disheartening to hear ignorant comments like, “Did you become diabetic from eating too much sugar?” or “Are you allowed to eat that?!” Just no . Educate yourself, please. 4. Don’t tell someone to stop talking about their illness. In my situation, it’s hard for me to ignore because it feels like this thing on my back every single second of every single day. Please don’t stigmatize something many people with diabetes and eating disorders have struggled to accept and acknowledge. Let us talk, it helps and is far better than denying it exists. 5. Don’t comment on food. “Wow, that’s a huge dinner.” “Ooh that looks like a nice treat!” “Glad to see your appetite is back.” I have to say, this often seems to be a dad thing. These comments aren’t helpful to someone struggling with an eating disorder or diabulimia. As with the point about body comments, just refrain from commenting on our food unless we specifically ask for your help or guidance. It has to come from us. Don’t be the food police, as it can cause us to want to isolate even more and protect the disorder, as twisted as that sounds. “You just need a good burger/sandwich/slice of cake in you!” Comments like this are made worse if followed by a term of endearment like “dear” or “darling” and are really unhelpful. Eating disorders are not just stubbornness or forgetting to have breakfast in the morning. Often someone struggling a lot will find it a huge challenge to eat in public and that’s not to mention the effort someone with type 1 diabetes needs to do to determine carbohydrates and insulin doses. I shouldn’t have to put on a show to someone else about my eating. 6. Don’t try to guilt someone into eating. “Please eat, for me?” This kind of emotional pleading is not fair for someone with an eating disorder. Their recovery is their own and you can support in ways that don’t involve manipulation. Making them eat because they feel they have to may lead to feelings of shame and possible self-damaging behaviors later on. 7. Someone’s eating disorder is about them, not you. “If you think you are fat you must think I am obese!” “What did I do wrong?” “Why are you doing this to me?” This one is a hard one, because it often comes from a parent who feels helpless. Personally, the hardest part of being ill has been the hurt it has caused to my loved ones. But my eating disorder is not about you. Regardless of any relevant cause factors, it comes down to the way I react. To suggest I would do this to myself to spite another person can be painful when most people with eating disorders only want to hurt themselves. It is a mental disorder and rational thought can be compromised. It can be so powerful that you just don’t realize it’s pulling the strings and the control you believed you had was actually your eating disorder. 8. Understand eating disorders aren’t just about weight. “I wish I could lose weight that quickly!” “I wish I was as thin as you.” “What’s your secret?!” These are all completely inappropriate comments if someone doesn’t know the circumstances of someone’s weight or behaviors. Again, eating disorders are all specific to the one struggling. For example, someone with body dysmorphia may see a different image in the mirror than what others around them can see. Additionally, for people with diabulimia, weight is not an accurate risk indicator, HBA1C levels are. People with diabulimia will often have huge fluctuations in weight as they manipulate insulin levels and so this cannot be used to determine how well or unwell someone is. 9. Be mindful of the way you talk about dangers of an eating disorder. “This could kill you, you know?” Sometimes, being told of the damage we are doing to ourselves can come off as patronizing. For example, I’m well aware of the risks. It’s not lack of intelligence that causes a person with an eating disorder to neglect their health needs. An eating disorder can make someone focus more on their destructive behaviors than their safety. 10. Don’t imply someone with an eating disorder can’t date. “You do realize men like a bit of meat on a woman’s bones, right?” It’s hurtful to imply someone with an eating disorder is engaging in the behavior to “get a man.” I don’t quite understand how this one seems to crop up so often. Eating disorders are not about vanity. A version of this post appeared on DWED . If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237. We want to hear your story. Become a Mighty contributor here . Thinkstock photo via Grandfailure.

    Claire Kearns

    Diabulimia: Having Diabetes and an Eating Disorder

    There’s been a lot of coverage relating to diabulimia in the press, certainly in light of how largely disregarded the condition has been until now, despite its staggering prevalence. It’s great to see such acknowledgment from the BBC article that brought a tide of traffic to Diabetics With Eating Disorders. It’s so crucial to get accurate information out there, especially after numerous past occurrences of grossly sensationalist reporting. The death of Lisa Day has prompted some of this. It’s disappointing that such a tragedy is the one thing that brings forth attention, when all our continuous shouting merely falls on deaf ears. But despite that, I know her family is determined to bring awareness to this fatal condition that caused the loss of their beloved sister and daughter. In turn, a service at Kings College London which will treat type 1 and 2 diabetics with eating disorders is hugely positive news which has placed diabulimia under a spotlight. However, traffic can result in road collisions. By this I mean loud voices of the misinformed and uncompassionate. Those people that will skim a story, but have already formed a negative judgment from the headline. A judgment that they want to push onto anyone they can, but most of all those they see with a spot of vulnerability. The best lesson is to never, ever read below the line. But it’s that self-sabotaging nature in me, and so I need this space to rant a little. Even if I fear I may just be preaching to the choir. Eating disorders are not a result of ignorance. On the contrary, it is a proven fact that the majority of those who have it actually have a high degree of intelligence. I have never met anyone with an eating disorder who is not smart, some to the point of intimidation. Instead, I have met so many talented people through treatment experiences and online support communities. These people can be great scientists, artists, writers. It is often the case that people who develop eating disorders actually think too much. Minds full of numbers and weights and ratios are not idle. Instead, they are over-occupied, fixated, obsessed. If you bring type 1 diabetes into the mix, the need to be clued up on nutrition and the mechanisms of your body is pertinent. You do not have the option to avert focus from any of that, and diagnosis can be a hugely overwhelming time. Furthermore, with diabulimia, insulin manipulation is a not a simple equation. Manipulation is often the fuel of an eating disorder, it feeds and sustains it. You can become someone you do not recognise, and do things you would never dream of. Sometimes, you become the master of trickery. All the while you are blind to the fact that a mental illness is pulling at the puppet strings attached to your limp feet, legs and arms. It’s not a choice. It is not a decision made with any rationality. Someone with an eating disorder and diabetes is not choosing to not take their insulin just because they can’t be bothered or want to throw their toys out the pram (in this case syringes and test strips!). They are not just being ungrateful for that crucial life source which is now so luckily available. The discovery of injectable insulin to treat diabetics is meaningful to everyone that has to rely on it to survive. But with a mental illness, with an eating disorder, survival is not a priority. It’s also not just “another label” that can be lumped in with other conditions — it has characteristics that require treatment to be specifically tailored. The roots of any eating disorder are deep and heavy. It isn’t an illness that just sits in a shallow pool on the surface, but it is all consuming river. It is not vanity, or selfishness or a fad. It is not just about appearance. Everyone who has an eating disorder will have their own stories to tell and different reasons as to why they developed one. Often these psychological origins can be tangled and extremely difficult for those who have it to try and unravel. “All diabetics have to do to stay on top of their health is take insulin” read one comment beneath a recent article on diabulimia. Firstly, this shows a huge disregard for the impact of type 1 diabetes as it is about so very much more than that. Secondly, again, someone with diabulimia isn’t just a diabetic, they also have a mental health disorder. Ultimately, all I ask is that if you don’t know about a condition such as this, if it’s something that seems beyond your scope of understanding, please do not automatically judge. Do not assume. Instead, listen, try to learn, have some empathy. You do not know the influence that harsh, unkind words can have. Ignorance spreads like wildfire, and if someone we care about adopts a similar view, well yeah, that can hurt. I’ll end this with a suggestion: Just don’t read below the line, especially if it’s The Daily Fail online. If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237 . This piece originally appeared on Diabetics With Eating Disorders. We want to hear your story. Become a Mighty contributor here.