Caylee Clay of Autoimmune Eats On How To Support A Loved One Who Is Struggling With An Eating Disorder
If you are struggling with orthorexia and if “health” is your primary concern, then it’s important to know that one of the least healthy things you can do is stress. Stress is a normal part of life, and everybody experiences stress. However, when we add all these food rules to our life and try to follow them, our stress significantly increases. This type of stress is NOT part of a normal life — it is ADDED on top of a normal life. Any small benefit we could have perhaps received from being so strict about food is immediately obliterated by the stress we have just added to our life. Unnecessary stress over food will harm you more than it will help you.
Eating disorders are complex mental health conditions that affect millions worldwide, transcending age, gender, and cultural boundaries. They are not simply about food but involve a range of psychological, physical, and social issues. Supporting a loved one through this struggle can be challenging, requiring understanding, patience, and knowledge of the right approaches to truly make a difference
In this series, we aim to shed light on the most effective ways to offer support, understanding, and hope to those battling an eating disorder. We are talking to psychologists, nutritionists, doctors, therapists, and survivors, who can provide valuable perspectives on nurturing recovery, fostering resilience, and promoting healthy relationships with food and body image. As a part of this series, we had the pleasure of interviewing Caylee Clay, RDN CDN CYT.
Caylee Clay, RDN CDN CYT (they/them) is a dietitian-nutritionist, autoimmune disease expert, and author of Gain Control Over Your Psoriasis, a scientific treatment plan based on intuitive eating. Caylee has over a decade of experience practicing nutrition, and specializes in autoimmune nutrition. There is a growing body of research demonstrating that having either an autoimmune disease or an eating disorder increases the risk of developing the other. As a result, Caylee’s work provides anti-diet autoimmune nutrition resources for both patients and healthcare providers that are based in research and science, not fad diets or fatphobia. Their work can be found on their website Autoimmune Eats, at www.autoimmuneeats.com)
Thank you so much for joining us in this interview series. Before we dive into our discussion, our readers would love to “get to know you” a bit better. Can you share with us the backstory about what brought you to your specific career path?
I currently work as a dietitian-nutritionist and medical nutrition author, where I provide information on using nutrition to improve autoimmune disease outcomes that is anti-diet and not fatphobic. When I was reviewing the medical literature to write my book, I became aware of a growing body of research indicating that people with autoimmune disease are at a higher risk for developing eating disorders — AND people living with an eating disorder are also at higher risk for developing an autoimmune disease! As someone who lives with an autoimmune disease and has struggled with disordered eating, this knowledge hit me like a ton of bricks. As a nutrition professional, I know that very strict and intense diets are often recommended to people with autoimmune disease. With this research connecting autoimmune disease and eating disorders, it became clear that these strict diets are actually unethical to recommend, especially by healthcare providers, since we know that dieting is a risk factor for eating disorders. It became my mission to spread better information that is actually based in research, science, and fact — not fad diets.
The story of how I arrived at this point begins in high school, where I was constantly plagued with headaches and stomachaches. My community, school, and home were replete with foods I simply didn’t like eating, and I struggled to find enough food that I actually enjoyed. In short, I largely only had access to food that was frozen, processed, from a restaurant or fast food chain, mass produced, and/or flat out tasteless. In hindsight, what I was craving more than anything was home cooked food made with whole and/or fresh ingredients. My life drastically improved when I decided to learn how to cook for myself. For me, the first step was improving and broadening my taste palette, which cooking for myself directly addressed and improved. I learned what I liked and didn’t like to cook and eat, and I began to eat more food more frequently. My headaches and stomachaches completely disappeared, plus I felt stronger, more energetic, and happier.
My life greatly changed for the better when I began to eat foods that — most importantly — tasted good to me and — secondly — that contained a wider variety of nutrients. Due to this transformative experience, I decided to study nutrition at the collegiate level and become a registered dietitian-nutritionist (RD or RDN). However, while in college, I also experimented with various food restrictions and rules. In hindsight, I can see that these were not helpful strategies for me, and my health was not better off as a result. It seems that I overcorrected in my quest to eat healthier.
As perhaps a blessing in disguise, my own autoimmune disease caused me to break and ultimately shed all the food restrictions and rules I had forced myself to follow. My autoimmune disease, psoriasis, first appeared when I was around 15 years old, after I caught the flu and strep throat simultaneously and became very sick. It started as just little scaly patches of skin on my elbows, and stayed that way for years. In college, things got much worse. My psoriatic skin patches were growing in size and number, plus I was struggling with debilitating joint pain, which is not uncommon in psoriasis. I could barely sleep at night because of the pain, and was about to postpone my last semester of college due to my declining health.
In a desperate attempt to feel better, I decided to try eating less gluten. My lucky guess paid off: my joint pain almost completely disappeared, and my skin improved. I was able to finish college and graduate with my degree. However, at this point in time there were much fewer gluten-free options available, and I couldn’t possibly maintain my self-imposed food rules while also eating mostly gluten-free. I had no choice but to prioritize gluten-free foods and allow myself to eat foods I wouldn’t have before, since I would soon be in pain if I ate too much gluten yet the other foods caused me no immediate harm at all. In this way, I learned to drop all of my food rules.
While I do still have to eat mostly gluten-free to manage my autoimmune disease, I don’t consider it a “rule” like before. I can and do still eat gluten. I allow my pain tolerance to guide my gluten intake — if I have the chance to eat something very delicious that has gluten, you will likely find me eating it. I often will choose to experience pain instead of missing out on something delicious. On the other hand, I usually pass on items with gluten that don’t particularly interest my taste buds. Therefore, whether I want to eat gluten or not becomes a choice that I get to make; a choice that can change from moment to moment, depending on my desires, wants, and medical needs.
While writing my book, Gain Control Over Your Psoriasis, I came across several research articles demonstrating that having an eating disorder increases the risk of developing an autoimmune disease, and vice versa. This completely rocked my world. While I was never formally diagnosed, I believe I have experienced periods with symptoms similar to avoidant/restrictive food intake disorder (ARFID) and orthorexia. As a result, I reworked my entire book manuscript to be anti-diet and based on the principles of intuitive eating. Now, I work to provide resources on autoimmune nutrition that is eating disorder informed, anti-diet, supports health at every size (HAES), plus is heavily based in science and research, not dangerous fad diets.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
My favorite life lesson quote is “Be good to yourself!” The idea is that you are your main caregiver, and no one can care for you like you can care for yourself. Being “good” to yourself could mean so many things that can quickly and easily change. When you are “good” to yourself, you get to decide what “good” means in that moment. For example, you might choose to eat a food because you like it, because it’s tasty, because it will make your body feel better later, because it’s a celebration, because it’s your culture, or many other reasons — all of which are good. Or, being good to yourself may have nothing to do with food and health at all!
Being good to yourself frames your choices from a perspective of self-care, gratitude to your body and self, and abundance. It’s a reminder to focus on positive things that you can do to make your life better, instead of focusing on what you “should” be doing instead. So many factors in our lives and our health are completely beyond our control. “Be good to yourself” is a call to not add yourself as another barrier to your success and recovery. To me, being “good” to myself does NOT have a connection to “good” (or “bad”) foods or behaviors, nor being a “good” or “bad” person. Instead, it’s about doing what I think is best for me.
Are you working on any exciting new projects now? How do you think that will help people?
In an effort to spread science-based information on autoimmune nutrition, I recently launched a new website called Autoimmune Eats. The information on this site is eating disorder informed, anti-diet, not fatphobic, heavily cited with medical research, plus is provided at no cost. My goal is to help people living with autoimmune disease learn how to use food to improve their symptoms and health outcomes using actual science, and to provide a voice in clear opposition to the autoimmune diet world. I regularly share my latest work on Instagram at @autoimmune.nutrition and with my email list.
Over the past few years, as I have been researching autoimmune nutrition, one thing has become very clear: being deficient in specific nutrients is a major risk factor for triggering the onset of an autoimmune disease. As a result, I am about to release a free guide on how to correct common nutrient deficiencies seen in the autoimmune community, of course without following any type of diet. My email list will be the first to know when this new resource is available, then next I will share on Instagram.
According to this study cited by the National Association of Anorexia Nervosa and Associated Disorders, at least 30 million people in the U.S. of all ages and genders suffer from an eating disorder. Can you suggest 3–5 reasons why this has become such a critical issue recently?
Unfortunately, our society currently operates in ways that promote eating disorders. One major way our society encourages eating disorders is by neglecting our collective mental health. A very clear marker of our declining mental health status is the fact that loneliness was recently declared a public health epidemic by the U.S. Surgeon General, Dr. Vivek Murthy. It is well known that social media and marketing are not good for our mental health in general, plus they reinforce impossible beauty standards, thereby contributing to eating disorders. These are also spaces where folks who are not experts in a field are able to speak as if they are, such as social media influences and celebrities. Additionally, many people have not recovered from the mental impacts of the COVID-19 pandemic, with few if any resources to help them recover. An even deeper but connected issue is the individualistic culture in the US. Instead, a community based culture would serve all of us better, especially those who are more vulnerable.
Also, it’s important to consider the fact that the prevalence of autoimmune diseases is increasing. Since research indicates that those with an autoimmune disease are at an increased risk for developing an eating disorder, sadly we can expect to see rising rates eating disorders along with autoimmune diseases.
Another contributing factor to eating disorders is trauma (source). This includes racism, sexism, homophobia, transphobia, ableism, fatphobia, colonialism, poverty, and more. Trauma is also a risk factor for developing an autoimmune disease, as well (source). With any increase in these traumatic factors, eating disorders may rise in accordance. It’s also important to consider that there can be a genetic predisposition to eating disorders. These folks are especially at risk.
Finally, it’s also reasonable to note that as awareness and information spreads, we are able to more accurately diagnose more people. By having a clear name and specific identifying features, diagnosis rates may increase, and this may or may not reflect an actual increase in disease prevalence across a community.
Based on your insight, what concrete steps can a) individuals, b) corporations, c) communities and d) leaders do to address the core issues that are leading to this problem?
On the individual level, it’s important to never comment on people’s bodies, even if you think it’s a compliment. Additionally, it is ideal to not make comments about your own body in front of anyone else. At the very least, do not speak poorly about your body in front of kids or teenagers, especially your own children.
Many corporations have and continue to make a fortune off of fat phobia. The logical solution to address the issue would be to stop any and all advertising campaigns that stigmatize fat bodies or glorify thin bodies. However, there is so much money being made (for example, in 2020 the dieting industry was worth $72 billion [source]) that it’s unlikely that corporations would make these changes on their own. There are no external groups or organizations holding the “wellness” industry accountable for the negative impact they have on people’s lives, either.
Communities would do well to support initiatives to eliminate food insecurity. Anyone who is food insecure and unable to regularly eat enough is by definition engaging in disordered eating. Even if they become food secure later, it may be difficult to stabilize their relationship with food (source).
Leaders would do well to create public service announcements (PSAs) educating the public about the dangers of eating disorders. A lack of information and misinformation about these illnesses are rampant, and increasing the public’s education would only help those suffering from an eating disorder. They could also take measures to reign in detrimental fatphobic advertising and marketing, and to eliminate food insecurity.
As you know, one of the challenges of an eating disorder is the harmful, and dismissive sentiment of “why can’t you just control yourself”. What do you think needs to be done to make it apparent that an eating disorder is an illness just like heart disease or schizophrenia?
Increasing awareness of the root causes of eating disorders may help the public to understand that they are illnesses, not personal failings. The fact that eating disorders have a significant genetic component, and that trauma experienced especially early in life can increase eating disorder severity, are not widely known (source, source). Another fact that is little known is that the presence of certain diseases, like autoimmune diseases, can increase the risk of developing an eating disorder as well. By describing the etiology of eating disorders as often rooted in unhealthy environments that trigger pre-existing genetic risk factors, including autoimmune disease, we may push the needle of public opinion and knowledge. The development of an eating disorder is multifactorial, and many folks are set up to fail.
Here is the main question of our interview. Can you please share with our readers 5 ways to support a loved one who is struggling with an eating disorder? If you can, can you share an example from your own experience?
1 . Eating disorders have genetic and environmental components, meaning that they may run in families. Studies have found that a person’s risk for developing an eating disorder increases when a close relative, like a parent or sibling, also has an eating disorder (source). Therefore, if possible, critically examining your own relationship with food and your body, and getting support as needed to improve your relationship with your own body may confer healing to your loved one, as well.
2 . Educate yourself on what your loved one is experiencing, and don’t expect your loved one to be your main source of information. Explore resources and information available on your own time, and be mindful of what may be helpful and supportive to your loved one in their time of need. Take care to determine what they need, why they need it, and how you may be able to provide it.
3 . For those with a loved one struggling with an eating disorder and another nutrition-related disease, such as an autoimmune disease, it’s important to not let claims of trying to “be healthy ‘’ get in the way of recovery. First and foremost, a healthy body is a well fed body. While nutrition certainly can play a large role in disease outcomes, it’s very difficult if not impossible to realize these improved outcomes if an eating disorder goes untreated. Loved ones can and should challenge all food rules or restrictions that are held for “health”, unless medically indicated and recommended by a healthcare professional who is educated on eating disorders. Instead, it can be helpful to focus on rediscovering the enjoyment that can be found in food and eating. Once a healthy relationship with food is well established, it is appropriate to begin making small adjustments in our eating patterns to support improvements in nutrition-related diseases.
4 . Encourage your loved one to change their media intake. Unfollow toxic accounts on social media, and instead follow pro-recovery accounts plus accounts of folks with different types of bodies than what they are used to seeing. Even better, take a break from social media completely. Mute commercials when they come on the TV. If you have the means, pay for subscription services where there are no ads. Actively disengage from advertising seen in public, by turning away and paying it no attention. Change the TV channel, radio station, or source of sound when dieting or weight loss commercials come on. Remove yourself from online groups or forums that are not pro-recovery or are triggering.
5 . In the eating disorder world, ARFID and orthorexia seem to occupy a backseat in the eating disorder. I see them spoken about the least in professional education on eating disorders for healthcare providers, in online resources, and in research. As a result, I think it’s important to take space to specifically address ARFID and orthorexia.
For ARFID, it’s important that loved ones not force food intake. The ARFID community is increasingly reporting being traumatized by well intentioned caregivers or healthcare providers who tried to force them into performing certain behaviors around food. Instead, allowing regular access to preferred foods, free access to supplements and food products that help facilitate the intake of adequate nutrients, meal planning around accepted foods, and reducing foods that may cause sensory distress are appropriate accommodations (source). Seek out healthcare providers who are trauma and eating disorder informed, and trust their process.
Those living with AFRID may also benefit greatly from participating in cooking, taking cooking classes, plus being a part of grocery planning and shopping. Other types of involvement in food production may be beneficial as well, such as gardening, harvesting their own food, and visiting or volunteering on farms. The idea is to make many foods as familiar as possible, from several different perspectives. While there may be hope that these exposures will increase the variety of accepted foods, this should never be expected. These are still important educational experiences regardless of whether they increase the variety of allowed foods. Avoid creating new trauma or negative associations around food by not forcing things and gradually introducing new foods with low stakes. Be curious and without judgment.
For orthorexia, in my experience it was important to learn that eating “perfectly” won’t improve your health, it will actually harm it. Food can be incredibly healing and wonderful for your health — yet, like anything else, it too has its limits. The “best diet” is one that, first of all, has ENOUGH food, plus that contains a fair amount of fruits, vegetables, whole grains, fat, and protein that are tasty and enjoyable to you — plus also includes regular consumption of your favorite foods, regardless of whether they could possibly be categorized as “unhealthy” or “bad”. In this sweet spot, the benefit we can derive from food is maximized, while our mental health is still preserved and even prioritized. If a true concern for health is the root of someone’s orthorexia, thorough education on this topic may support recovery. However, often a concern for being “healthy” is used as a mask for deeper issues, so supporting your loved one may also require more investigation.
How do you navigate the balance between offering support and respecting the autonomy of a loved one with an eating disorder?
This is a difficult question to answer, and striking this balance will vary greatly from person to person. There are many factors that will impact which approaches are appropriate and which are not. First and foremost, it’s important to remember that eating disorders happen for many reasons. Keeping the big picture in mind will help you and your loved one to identify the true root cause, as an eating disorder can often be a symptom of another problem.
Additionally, work to create respectful boundaries around your loved one and their process and, if possible, create an environment that is free of judgment. Honor their boundaries by identifying appropriate times and places to hold serious discussions, ask their permission before delving into sensitive conversations, respect their needs and preferences, avoiding comparison to others, and reduce feelings of judgment or accusation by using “I” statements to convey your concerns and observations. Encourage genuine transparency from all involved parties, and check in regularly with your loved one to see how you’re doing and if they need anything different from you.
You should be prepared for denial and resistance. However, if you are able to help them identify reasons why they would want to change their behavior, this can help bridge the gap from their current behavior to recovery. This process will require giving your loved one plenty of patience and support. Demanding ultimatums, blaming, shaming, commenting on weight or appearance, or giving overly simplistic solutions that ignore the complexity of the issue will not be helpful, and may cause further harm (source).
Educate yourself on what your loved one is going through, without asking them to be the source of your information. Make sure that you have a dedicated time and space away from your loved one to process your own issues and concerns.
Is there a message you would like to tell someone who may be reading this, who is currently struggling with an eating disorder?
I can most readily speak to someone who is struggling with ARFID or orthorexia. If you are struggling with ARFID, know that this is not your fault, and nothing is wrong with you. I suspect that modern day society’s disconnection from the natural world has a lot to do with the ARFID experience. We no longer know where our food comes from, we often don’t know how it’s made, and we rarely eat seasonally which means whole foods often lack flavor, are underripe, taste bad or off, plus have more unexpected textures. I became interested in learning how to eat more foods because I was sick of being sick from not eating enough. If you feel the same, then perhaps embarking on a journey similar to mine (but hopefully avoiding my mistakes!) will help. If you don’t feel the same, then I suggest working with an eating disorder informed dietitian who will help you ensure that you are meeting minimum nutrient goals in ways that are acceptable to you.
If you are struggling with orthorexia and if “health” is your primary concern, then it’s important to know that one of the least healthy things you can do is stress. Stress is a normal part of life, and everybody experiences stress. However, when we add all these food rules to our life and try to follow them, our stress significantly increases. This type of stress is NOT part of a normal life — it is ADDED on top of a normal life. Any small benefit we could have perhaps received from being so strict about food is immediately obliterated by the stress we have just added to our life. Unnecessary stress over food will harm you more than it will help you.
In your experience, what are the most effective strategies for building resilience and a positive self-image in individuals recovering from an eating disorder?
One important strategy for building resilience is to work with mindset. Often, negative self-talk is a component of eating disorders, and its continued presence can stifle recovery. It’s important to remember that the work is NOT to try to banish every “bad” or negative thought that might push you in unsafe directions.
Instead, the work is putting in effort to not believe those thoughts, to find evidence that disarms them, to follow them up with more positive thoughts, and other similar strategies. In my work with clients, a strategy that has been very effective is that for every negative thought, you owe yourself 3 positive or at least neutral thoughts about yourself and/or your body. It can be as simple as “I have a heart that is pumping blood all around my body, keeping me alive” or “I am good at math” or “I’m thankful for this hand so I can pick things up”. It might feel silly, forced, or even stupid, but that’s okay. In my experience, eventually the positivity sinks in.
You may never completely get rid of that voice in your head saying awful things. This is just reality. What matters is knowing that you are allowed to have any type of thought — however, whether or not we actually believe every single one of our thoughts and act on them is a choice we get to make, every time. In time, these are the thoughts that we will begin to label as silly, and the positive thoughts we purposely cultivated about ourselves will shine forward as the truth.
Other types of harmful thoughts include those that provoke feelings like guilt or shame. Know that, at one point, your eating disorder likely served a purpose for you and was used to navigate something difficult in your life. However, it is no longer serving you, and you are growing the skills needed to deal with the same or similar problems in safer ways. Doing work to identify your core values, and engaging in activities that give you a sense of identity that is in line with your core values, can support this process.
In a similar but different way, it’s also wise to critically engage with our culture, and critically evaluate the incorrect thoughts it has placed into our heads. This includes pushing back, at minimum in your own head, when you see or experience fatphobia, when thinness is exalted, and even when our bodies are painted as gross objects that must be manipulated just to be accepted (looking at you, marketing).
Another thought or mindset to change is the idea that food is just nutrients, and nothing more. This is not true. Food is more than just nutrients — it’s also culture, history, flavor, enjoyment, celebration, connection, religious and spiritual, a way to connect to Mother Earth, and so much more. Food is truly greater than the sum of its parts. The Western view of food is absurdly reductionist.
What are your favorite books, podcasts, or resources that have helped people with this struggle? Can you explain why you like them?
I try to educate myself with resources that come from a wide variety of perspectives, including on race, gender, neurodivergence, income levels, from the medical industry, and more.
Some of my favorites are:
- Fearing the Black Body: The Racial Origins of Fat Phobia by Sabrina Strings
- Intuitive Eating: A Revolutionary Program That Works by Evelyn Tribole and Elyse Resch
- The Intuitive Eating Workbook: Ten Principles for Nourishing a Healthy Relationship with Food by Evelyn Tribole and Elyse Resch
- Naureen Hunani, RD at RDs for Neurodiversity, www.rdsforneurodiversity.com/, @rds_for_neurodiversity on Instagram
- Shana Minei Spence, MS, RDN, CDN, www.thenutritiontea.com, @nutritiontea on Instagram
- Laura Iu, RD, CDN, CNSC, RYT, www.lauraiu.com, @laura.iu on Instagram
- Gloria Lucas at Nalgona Positivity Pride, www.nalgonapositivitypride.com, @nalgonapositivitypride on Instagram
- Sam Previte, RD, www.find-foodfreedom.com, @find.food.freedom on Instagram
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the largest amount of people, what would that be? You never know what your idea can trigger. 🙂
Food insecurity is a serious issue that we absolutely have the resources to eliminate or significantly reduce. I would love to see this issue addressed by providing more food right where people live. If I could inspire a movement, it would be the widespread practice of gardening and farming on green roofs. By investing in and expanding green roofs, we could reduce the cost of high quality foods by growing them nearby. We could create good jobs growing food close to where people live. We could expand education for kids about where food comes from.
Local and seasonal food has excellent flavor, plus is richer in nutrients since it doesn’t travel far distances from the farm to our plate and instead can ripen on the plant. Our current food system is deeply disconnected from the seasons and locally produced food, which green roofs could help repair. Also, green roofs would also absorb water and create less rain runoff, which is a major problem in cities like New York that has only gotten worse in recent years. They would give more habitat to pollinators (who we depend on to survive!) and birds, plus reduce the heat radiating off of cities and lower the temperature of cities in the summer. Additionally, if done en masse, perhaps some farmland could be converted back to natural habitat, to support the global ecosystem (again, something we depend on to survive!). Even more, the carbon footprint of this foot would likely be much lower than similar but inferior foods grown far away then shipped to us.
While it can be great to have access to foods, herbs, and spices that can’t be grown nearby, this practice is way overdone. It’s time to reclaim some of our food sources back from globalization.
How can our readers continue to follow your work online?
I run the website www.autoimmuneeats.com, which helps people to improve their autoimmune disease using food and nutrition that is also anti-diet and not fatphobic. All my work is heavily cited with research from the medical literature, and in time I plan to work with Indigenous healers to share non-Western resources on autoimmune disease from other cultures. I have published many evidenced-based articles already, and continue to post more. I recommend joining my email list, so you are the first to know when new articles are published, and when new resources (like recipes and free handouts) are available.
I am also active on Instagram, at @autoimmune.nutrition. Here I love to post about autoimmune nutrition research, tips for using nutrition to improve autoimmune disease, the foods I’ve been enjoying lately, my garden, and more.
Thank you so much for these insights! This was so inspiring!
Caylee Clay of Autoimmune Eats On How To Support A Loved One Who Is Struggling With An Eating… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.