Caregivers are so important. For many, including people with Eating Disorders, having someone to lean on for support means the difference between life and death. Caregivers are hard working, selfless, brave and unwaveringly kind. That is why, on World Kindness Day we are outlining 5 reasons why caregivers are real-life heroes.
No task is too much
For caregivers no job is too difficult or mundane. Whether it be helping a loved one with grocery shopping or sitting with them as they complete their first full meal in months, caregivers are always there to provide resolute support. Some people with Eating Disorders have a hard time expressing their gratitude, especially if they are deep in the throws of their disorder; but caregivers continue to show up no matter how difficult it was the day before. This takes immense strength, bravery and perseverance. They know that the person in their care is suffering and they are willing to do whatever it takes to help them get through the day, and hopefully further towards recovery.
They provide emotional support
Caregivers are often the first line of defense when it comes to their loved one’s emotional needs. They are there to comfort and support when times are tough and provide encouragement when motivation wavers. They often act as a strong, steady force, ready to take on whatever the Eating Disorder throws at them. Many people with Eating Disorders have deep emotional needs and caregivers often have to learn how to address them, while remaining a constant reminder of recovery. It can be a steep learning curve; but one that caregivers remain committed to time and time again, showing their strength and tenacity in the face of hardship.
They become experts in medical care
Eating Disorders can come with many medical complications, many of which are life threatening. Caregivers often become experts in their loved one’s medical care, especially if they are unable to make sound decisions for themselves. Learning how to talk to doctors and address the medical issues that can arise from an Eating Disorder is like learning a new language. Yet caregivers take it on in stride knowing that being educated is the best way they can help the person in their care.
They take care of business
While caregivers provide lots of emotional support, they also keep things organized and on track. They maintain eating schedules to ensure their loved one is getting everything they need at each meal and snack. They often help handle daily living tasks like cleaning, putting garbage out and grocery shopping. These tasks can be difficult to do for some people with mental illness and caregivers are always there to help take some of that burden away.
They are unwavering advocates
Caregivers are the most dedicated advocates. They make phones calls, send emails and even knock on doors to get their loved one the help they need. They are their voice when they can’t advocate for themselves. And that…right there is priceless.
Caregivers truly are heroes; but sometimes they need support too. If you are a caregiver who is giving everything you have to support someone with an Eating Disorder, don’t be afraid to reach out. Check out F.E.A.S.T (www.feast-ed.org) or NEDIC (www.nedic.ca) for resources on how to help your loved one and to also get support for yourself.
5 reasons why caregivers are real-life heroesHilary Thomson2020-11-13T15:18:45-05:00
Eating Disorders are extremely hard to detect. With many different diagnoses including Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, Orthorexia, Otherwise Specified Feeding and Eating Disorder (OSFED) and Avoidant/Restrictive Food Intake Disorder (ARFID), there are a variety of signs and symptoms which might signal that someone is starting to struggle with an Eating Disorder. This can make them particularly hard to diagnose, especially in a world that is rife with diet culture.
For parents and caregivers this can be extremely unnerving. Looking back at the start of my Eating Disorder there were definitely some indicators early on that I was developing an unhealthy relationship with food. My experience is with Anorexia, although I did develop some bulimic behaviours over the course of my Eating Disorder. That being said, from my experience to onset of many Eating Disorders is quite similar, no matter what the diagnosis ends up being. Here are some of the signs I wish my family had been aware of when I was a teen developing an Eating Disorder.
This is an easy one to fly under the radar. I come from a family that enjoys food, so it wasn’t odd for us to be talking about what we were going to make for dinner at breakfast time. However, when I was first developing Anorexia, the food obsession was incessant. I got much more interested in cooking for the family and my sister, who also developed an Eating Disorder, even decided she wanted to become a chef and asked for cookbooks for Christmas. The food obsession thing is tricky. There are many people that have a healthy relationship with food who find a passion for cooking. But I would say that if your teen or someone in your family suddenly seems to become obsessed with food, when they weren’t as interested in it before, it is a cause for concern.
Not only did I become obsessed with food, I became extremely inflexible with it as well. I stopped letting my parents make my meals, except for dinner. Dinner was the holy grail of my day and if plans changed at all I would get extremely upset. I remember one time throwing a tantrum because my Dad decided to make something different than the tofu stir fry I was expecting. This type of inflexibility is a common sign of an Eating Disorder and can manifest in many forms. Maybe, like me, your loved one is suddenly the only one who can prepare their meals; or they get extremely upset about any changes of plan surrounding food. Others may be more deliberate in their choices, like suddenly becoming a vegan out of the blue. Any significant change in diet; or change in the way someone interacts with food can be an important early sign of an Eating Disorder and should be addressed.
ANY weight changes
This may seem like an obvious one; but if someone isn’t aware that it may be an early sign of an Eating Disorder, this one can also go unaddressed. When I was first developing my Eating Disorder I lost some weight; but because my family was going through a difficult time with my sister I chalked it up to stress. My parents, friends, family and even my doctor seemed to accept this excuse and only caught on to the fact that I was struggling with food when I continued to lose weight, despite being told I needed to eat more. As someone who was in a naturally smaller body to begin with, it didn’t take much for me to enter into the underweight category; but for many who suffer with Anorexia, they are never clinically underweight. People developing Bulimia or Binge Eating Disorder may even gain weight as a result of their issues with food. This is why ANY change in weight should be considered a possible symptom of an Eating Disorder and should not be overlooked.
I started the National Initiative for Eating Disorders (NIED) back in 2012. At the time, our 35-year old daughter had been suffering with anorexia and bulimia for two decades – it stills feels impossible to reconcile the amount of time it’s had a grasp on her life.
The life of any caregiver for someone with a mental illness is a series of never-ending harsh realities. This is mine:
Twenty years ago, the word “caregiver” was not in my vocabulary. When you hear “caregivers” most people think of seniors being looked after and cared for by adult children – who may even be seniors themselves. I come from an entirely different caregiver population (though I’m a senior myself!).
My caregiving journey began in 1999. Little did I know that our youngest daughter, almost 16 at the time, was struggling with self-esteem and anxiety issues and that an Eating Disorder was about to become a devastating bomb dropped on her and the rest of our family.
When she first got sick in high school, her friend came to tell me she was throwing away her school lunch. Around the same time she became a vegetarian, started making and requesting ‘funny foods’, and exhibiting strange kitchen behaviours. Her overall attitude also started to change.
“Where do we go from here?” I remember asking myself.
Our first thought was her pediatrician. At the time, we were so naïve and didn’t know we were about to get caught into the whirlwind of an unknown illness. We had no idea where we were heading.
I still remember my husband frantically charging through downtown Toronto to the National Eating Disorder Information Centre (NEDIC) to gather names of therapists, doctors, dieticians, nutritionists – anyone we could call or reach out to for help. There was no Google at that time, and the internet was in its infancy.
At the beginning of our daughter’s illness, I waited anxiously to attend a weekly peer support group for mothers – a life-saving program.
I vividly remember sitting in this group and watching the facilitator ask those in the room to share how long and how sick their daughters were. Some said 3 years, others said 5 years, and even some said 10 years.
“Yeah right, we will be done with this in a year,” I remember thinking. Unfortunately, this was not my reality and I became one of those mothers.
We have tried everything to help her. From tough love to unconditional love, to having her living at home and to refusing to have her live at home. From a public intervention televised nationally, to her living in safe houses, renting basements, incarceration, inpatient and outpatient programs – the list goes on.
Never in our wildest dreams (or nightmares) did we think we would be taken down these dark roads with our daughter who had everything a kid could wish for. We were loving parents doing everything we possibly could within reason for her and her older siblings. We even uprooted our lives and moved houses in the hopes of making our lives ‘better’ and giving her privacy in our basement.
In 2016, I took her to the E.R. to be rehydrated – over 20 times. I would drop her outside and let her call me when she was done. I was getting to the end of my rope.
My only respite in this time was knowing at least she was safe in the hospital, too sick to run out and with people watching over her. I was ‘free’ for a few hours – imagine having to think like this.
To this day, our hearts sink whenever we receive texts or telephone messages from her, and have had to create an alert system so our own stress levels are lessened.
One major lifestyle change we have made, with her agreement, is locks on the fridge and freezer. The only groceries in the kitchen are spices and seasonings. The rest are locked away. My grandkids are accustomed to asking “for the key to have a snack”. This is still reality of our lives.
Eating Disorders are not a choice. Some people believe Eating Disorders are just a rich, vain teenage girl’s malady. Nothing could be further from the truth.
Eating Disorders affect all genders, racial, ethnic and religious identities, sexual orientations and socio-economic backgrounds.
Twenty years of a living nightmare cannot be condensed into a small blog post. But it is enough to paint a dark picture of the life my family and I have had to live with, effecting us all both emotionally and financially.
There is good news though. After 19 years, our daughter has finally started her ascent up the mountain of recovery. She is driving again after 12 years of not being allowed to, she’s gained weight and is content. It feels like we have our daughter back.
We are starting to finally feel that all the strength, love and her will to lead a quality life is suppressing the voices of her mental illness.
Although the stress and worries will never leave us alone, we have, over the past years as well, had to remake our lives as a couple and continue living and trying hard every day to enjoy our lives, which we do and I count my blessings every day.
This blog was originally posted on Frayme.ca. Frayme leads a national and international network that connects mental health, health and social services working with youth and young adults to accelerate the integration and implementation of youth care in Canada and around the world.
The Eating Disorder that dropped like a bomb: A mother’s 20-year journey of caregivingWendy Preskow2020-10-06T09:27:51-04:00
It is no secret that Eating Disorders have the highest mortality rate of any mental illness. According to the National Eating Disorder Information Centre (NEDIC) website, a 2002 study showed that 10 per cent of individuals with Anorexia Nervosa will die within 10 years of the onset of the disorder.
Most people assume that this death rate has to do with all the physical ramifications of being extremely malnourished. However, suicide is actually the second cause of death among people with Eating Disorders, after cardiac arrest.
Sara L. was diagnosed with Anorexia when she was 14 years old and says that she has suffered with suicidal thoughts for as long as she has had her Eating Disorder. She says she first thought about suicide when she was feeling abandoned and alone in the hospital. As she got older, she found that her suicidal ideations became much more prevalent in response to an intense feeling of hopelessness about her Eating Disorder. “I was feeling like a huge burden and really stuck; like this was never going to get better,” she says. “And if it was never going to get better, I didn’t want to live that way.”
Sara attempted to take her own life on three separate occasions. She says a lot of what lead her to act on plans to end her life had to do with that intense sense hopelessness and feeling of being a burden on those around her. She also says the fact that her brain and body were severely malnourished played a role in exacerbating her depression and made ending her life seem like the only option.
Sara acknowledges the fact that it can be extremely difficult to help someone who is having suicidal thoughts. She says that even though she expressed how constant her suicidal ideations were, it was really hard for her support system to know when those thoughts were turning into an attempt to go through with ending her life. “There was a lot of secrecy when it came to actually going forward with that,” she says. “That was just the point that I was at and I wasn’t willing to accept help from anyone.”
Sara now has some distance from her suicide attempts and works in the mental health field. She says that while suicidality is hard to address, there are some warning signs and things that caregivers can do to help support and protect their loved ones. She says some of the most common things to watch out for are low mood, withdrawal, isolation and verbalization that they’re tired of dealing with their mental illness, are feeling hopeless or that life is pointless and meaningless.
Keep the dialogue open
Sara says it is very important to keep the dialogue open with the person who may be suffering with suicidal ideation. “Suicidal thoughts wax and wane and as long as that conversation is ongoing, they’re going to catch people when they are more willing to open up,” she says.
What helped for her is having someone who she knew she could talk to about her suicidal thoughts, without judgement. She found comfort in the fact that, when she was willing, she could reach out to her sister for support and know that she would listen, without telling her that she shouldn’t feel the way she was feeling. “I could even just say it out loud and have her offer suggestions as to what to do in that time, knowing that she would only offer empathy and not get mad at me for having those thoughts,” she says.
Don’t assume you understand
Sara also says she always advises people not to say they understand what the sufferer is going through. “You really absolutely have no idea what it is like for that person, regardless of whether you have experienced suicidal thoughts before,” she says. “When I hear that it’s very invalidating.”
Make sure they know you want to support them
In Sara’s experience it is also important to meet the person where they are at, while also telling them that you are there to help them get to a better place. “Having people, even if it becomes a broken record, tell you that you are not a burden,” she says. “Because that’s the trick of the mind where your depression or suicidal thoughts tell you that people would be better off without you when actually that is not the case.”
If you have a plan – wait
Sara says that if she could give any advice to someone having suicidal thoughts or making a plan to end their life it would be to postpone their actions and reach out if they can. “Those thoughts wax and wane and in 12 hours you might feel differently,” she says.
Suicide is not an easy thing to address and it is often veiled in a lot of secrecy. Whether you are someone suffering with suicidal ideation or a caregiver, don’t be afraid to reach out for help. Counsellors at Crisis Services Canada are available 24 hours a day at 1-833-456-4566. Links to suicide crisis hotlines can also be found on the Open Counselling (https://www.opencounseling.com/hotlines-ca) and Teen Health and Wellness (https://teenhealthandwellness.com/static/hotlines) websites.
How to support a loved one who is struggling with suicideHilary Thomson2020-10-05T20:52:08-04:00
Today is International Youth Day and NIED would like to acknowledge all the teens and young adults in Canada who are struggling with mental illness. You are not alone.
Eating Disorders are mental illnesses that often (but not always) show up in adolescence. Although Eating Disorders can affect people of all ages, genders, races, and socioeconomic backgrounds, many often report pre-occupations with weight and shape starting around puberty. This is usually while they are still in school and living at home with their parents, who may not know what to do if their child is showing signs of an Eating Disorder.
Dr. Shari Mayman has been working in the field of Eating Disorders for 15 years. She started her career as psychologist in the Children Hospital of Eastern Ontario (CHEO) Eating Disorder program where she worked with many children and teenagers struggling with Eating Disorders and their families. At CHEO parents were heavily involved in their children’s care, as the program used a family-based approach. Dr. Mayman says that family-based therapy is an approach that is proven to work well, but it didn’t have a strong enough focus on the multitude of emotions that come up during the recovery process, both for the patient and their caregivers.
About ten years ago two psychologists, Dr. Adele Lafrance and Dr. Joanne Dolhanty, filled that gap with the creation of Emotion Focused Family Therapy (EFFT), a modality on which Dr. Mayman’s current practice, at Anchor Psychological Services in Ottawa, is focused. It was created to support parents of children of any age support their loved ones in recovery (both emotionally and practically), and to address “emotional blocks” that may be getting in the way of a them providing this support. Dr. Mayman says these “emotional blocks” are normal and expected, and often show up in the form of guilt, with parents wondering what they did to cause their child’s Eating Disorder. “Shame and self blame often come up,” Dr. Mayman says. “If you think you are the problem, then it is hard to be part of the solution.”
EFFT is focused on breaking down that self blame, as well as other emotions such as fear, anger, resentment, and grief, and giving caregivers the tools they need to support their own and their child’s emotional needs. Through a process called emotion coaching, parents and caregivers are taught how to coach their children through difficult feelings, which are often at the crux of the Eating Disorder. “Emotional avoidance is central to all mental health issues,” Dr. Mayman says. “Restricting, bingeing, purging and over-exercising are all emotion-numbing strategies.” EFFT also focuses on teaching caregivers strategies to facilitate symptom reduction, and to deal with the intense emotions that arise when symptoms are reduced or eliminated.
Another impactful component to EFFT is the repairing of any relational injuries, both past and present. This is not to place blame, but to create the trust that is needed in order for parents to effectively support their child through the recovery process. “Caregivers have this tremendous healing power when they have compassion and empowerment holding them up,” Dr. Mayman says. “Then they are also more ready to repair things that need to be repaired.”
By instilling parents with the confidence and tools they need to support their children, they are more likely to help them make change in a way that is sustainable and effective for everyone. Dr. Mayman says their goal is to have parents and caregivers acting like a Saint Bernard, with sensitivity for their child’s struggles; but also a steady and assured response to emotional stress. “It’s focused on empowering caregivers and giving them the ability to act as healing agent.”
Dr. Mayman wants to stress that the tools that are the foundation of EFFT are learned, and no parent should feel badly about not having the knowledge to heal their child’s Eating Disorder in their back pocket. This is why Dr. Mayman and her partner at Anchor Psychological Services, Dr. Katherine Henderson, offer workshops for parents three to four times a year, to help teach the EFFT skills in an immersive setting. Even though their practice is based in Ottawa, Dr. Mayman says there are EFFT practitioners all over Canada.
While EFFT is fairly new on the scene in the treatment of Eating Disorders it has spread like wildfire in treatment spaces across the country because of its effectiveness. For more information about EFFT or to find a practitioner in your area visit. www.efftinternational.org.
Emotion Focused Family Therapy (EFFT), and how it can really help you and your struggling teenHilary Thomson2020-10-05T20:52:40-04:00
It is not easy to support someone with an Eating Disorder.
Kirk Mason was the partner of Michelle Stewart, the former head of communications for the B.C. Ministry of Health, who suffered from a devastating Eating Disorder for 32 years before it eventually claimed her life in 2014.
Mason met Stewart when she was in her mid 30s and had already been living with an Eating Disorder for 17 years. It wasn’t until they had been living together for four months that Michelle sat him down one day and told him about her history. “She said I completely understand if you don’t want to be with me, if you want to walk away from this,” Mason remembers.
But Mason didn’t want to walk away. He started educating himself about Eating Disorders and how to support Stewart as best he could. He even started going to a support group in Victoria for caregivers of people with Eating Disorders. He says it was shocking for many people in the group, who were parents of teens with Eating Disorders, to hear the story about a grown woman who was still struggling with her Eating Disorder after so many years.
Mason supported Stewart through many emergency room visits and a short stay in an inpatient treatment program but nothing seemed to be able to shake the illness that was deeply ingrained in her life. Mason says Stewart was very good at making it seem like everything was going well. “Everyone thought she was quite normal,” Mason remembers. He says her position at the Ministry of Health was sometimes difficult for her because she had to address files of people with Eating Disorders while keeping her own secret alive. “Cases of people with anorexia and bulimia would be put right on her desk,” Mason says. “There were some really tough times for her.”
Mason says he sometimes wishes he had been more upfront with Stewart about her Eating Disorder. He says he always avoided her triggers and they never got into arguments about her illness. “I became complacent,” he says. “I wish I had been more communicative with her, more involved.”
That being said Mason stayed by her side, a constant support through her diagnosis with end stage renal disease and eventual death. He says it was important to him to remain committed to Stewart and show her kindness, compassion and understanding both in her illness and end of life. “It’s something I never thought I would experience but I am glad I did because it opened my eyes,” Mason says.
Stewart’s older sister Karen Flello also played a key role in supporting her throughout her long battle with her Eating Disorder. Flello remembers Stewart first exhibiting signs of an Eating Disorder at 16 in the 1980s when very few healthcare professionals knew how to treat the illness. “We were given a lot of bad advice,” she remembers. “It completely ignored the root causes and biological connections.”
There is not doubt that supporting her sister through over three decades of an Eating Disorder was hard for Flello. All she ever wanted was for her to see how smart, loved and worthy she was. Flello said she had to realize that she was not to blame for not being able to heal her sister’s Eating Disorder. All she could do was focus her energy on being there for her when her illness would let her accept help. “It’s no different than if the person has a physical illness that you can’t cure,” she says.
Flello says if she could give any advice to people supporting a loved one through an Eating Disorder it would be to educate yourself, talk as openly about it as possible and encourage them to seek treatment early. She also says it is extremely important to set boundaries and make sure you are creating your own practice of mindful self compassion. “Whenever things got bad I went to counselling,” she says. “I needed to know how to cope.”
Mason agrees that educating yourself as a caregiver is key to being able to adequately support someone with an Eating Disorder. The desire to be thin is just scratching the surface when it comes to these complex illnesses. Mason says every part of Stewart knew that what she was doing was dangerous and that it would most likely eventually claim her life. “For her it was all about control,” he says.
Mason also encourages caregivers to seek support for themselves. Whether that be through a support group, individual counselling or family and friends. This is something that Stewart herself talked about in her blog, where she documented the end of her life. “Remember and acknowledge your own need for a helping hand and don’t be afraid to reach out,” she wrote in a post on December 5, 2013. “You will lead by the example of your own willingness to acknowledge there is no prize for suffering alone.”
“Lead by example” – How to support someone with an Eating DisorderHilary Thomson2020-10-05T20:53:00-04:00
Firstly, let me introduce myself. My name is Hilary Thomson and I am a journalist and writer based in Kemptville, Ontario. I was diagnosed with anorexia when I was 16 and the past 15 years has been a whirlwind of hospital admissions and treatment attempts. I have been in steady recovery now for three years and while I don’t consider myself fully recovered; I am definitely on my way.
So, what am I doing here? Having struggled with my mental and physical health for so long I am passionate about raising awareness for Eating Disorders and helping others on their recovery journey. I have known about NIED ever since they launched in 2012 and always felt that one day I wanted to get involved. I started out on NIED’s education committee, helping to organize symposiums, but I soon got the opportunity to get involved with their communications team. My training is in journalism, so it felt like a perfect fit.
I am so excited to have this platform to further NIED’s mission to provide access to educational, informational, and recovery-oriented resources related to the treatment and prevention of eating disorders in Canada. The goal of this blog is to provide engaging and well-researched content geared towards people with Eating Disorders, their caregivers and healthcare professionals. It will include everything from useful recovery tips to interviews with people with Eating Disorders from diverse backgrounds, knowledgeable Eating Disorder treatment professionals and advocates. The goal is to represent the reality of Eating Disorders and treatment in Canada and provide a platform for insightful perspectives and conversations.
NIED is thrilled to be launching this blog on World Eating Disorders Action Day, an initiative that unites activists across the globe to expand global awareness of Eating Disorders. There are roughly 1 million people struggling with Eating Disorders in Canada alone right now, many of whom are suffering silently and without proper support or treatment. Eating Disorders thrive in isolation and the more people speak out about their experience the more likely we are to see change. On this day of action we are asking you to consider telling your story. If you are not sure how we have prepared a document which outlines how to tell your story responsibly, without putting you or anyone else at risk. You can download the pdf here.
We would love to see this blog morph and grow into something that is driven by our community. We want this to be a welcoming and informative space for anyone looking for support in their own recovery or help in supporting a loved one or patient/client. We are extremely interested in hearing what you would like to see. Is there a topic you want us to cover? A person you would like to see interviewed? Do you want a platform to help tell your own story? We would love to help.
Contact us here and let us know what you think. What do you think is missing from the Eating Disorder recovery space?