Exploring how chronic illnesses, including Ehlers-Danlos syndrome (EDS), POTS, and MCAS, can influence our relationship with food, eating behaviors, body image, and mental health.
Blog Post by Contributing Editor Tamie Gangloff, M.A.
Clinical Outreach, Education & Sponsorships Representative at Hidden River Treatment Center
Disclaimer: I am not a medical doctor, and this article is intended for educational purposes, not medical advice. I approach this topic from two perspectives: my professional experience and my lived experience navigating hypermobile Ehlers-Danlos syndrome and other chronic medical conditions.
First and Foremost, I Believe You
Many people living with chronic illness have experienced having their symptoms questioned, minimized, or dismissed by healthcare providers, family, or friends.
Recovering from an eating disorder can already feel like a balancing act.
Between appointments with dietitians, mental health professionals, medical providers, and support groups, recovery requires significant time and energy. Add chronic medical conditions, additional specialists, physical therapy, and unpredictable symptoms, and it can feel like walking a tightrope.
When we think about eating disorders, conversations often focus on weight, body image, and emotional distress. But what happens when eating physically hurts? What happens when food triggers nausea, dizziness, digestive distress, or allergic reactions?
The question isn't always whether someone has an eating disorder or a medical condition. Sometimes, it's both.
Sick Enough: Living with Invisible Illness
About 75% of chronic illnesses and disabilities are invisible, meaning someone may look healthy while experiencing significant physical symptoms.
When symptoms aren't visible, individuals may feel they aren't "sick enough" to deserve support, accommodations, or treatment. This can lead to self-doubt, internalized ableism, and reluctance to ask for help.
The same experience is common among individuals with eating disorders, particularly when their appearance doesn't match society's stereotypes of what an eating disorder looks like.
You don't have to look sick to be struggling or deserving of care.
Understanding EDS, POTS, and MCAS
Ehlers-Danlos Syndrome (EDS)
EDS is a group of inherited conditions affecting connective tissue, which helps support and hold the body together. Think of connective tissue as the body's duct tape!
Because connective tissue exists throughout the body, EDS can affect joints, skin, digestion, and other systems.
Individuals may experience chronic pain, joint instability, fatigue, nausea, early fullness, and difficulty tolerating certain foods. These symptoms can complicate eating disorder recovery and everyday functioning.
POTS and Eating Disorders
Postural Orthostatic Tachycardia Syndrome (POTS) affects how the body regulates heart rate when standing. Symptoms may include dizziness, a racing heart, fatigue, brain fog, nausea, and digestive discomfort.
Eating, especially larger meals, can sometimes worsen symptoms. Someone may begin eating smaller portions, avoiding certain foods, or feeling anxious around meals.
Movement can also become frightening when everyday activities, such as climbing stairs or showering, cause uncomfortable changes in heart rate.
Importantly, malnutrition and dehydration associated with eating disorders can cause symptoms resembling POTS or worsen existing POTS symptoms.
A thorough medical assessment is essential to understand what's causing the symptoms and how best to address them.
Mast Cell Activation Syndrome (MCAS)
Mast cells are part of our immune system and act like the body's alarm system. With MCAS, this alarm system can activate inappropriately, releasing chemicals such as histamine that cause physical reactions.
Symptoms may include flushing, hives, nausea, stomach pain, diarrhea, a racing heart, and changes in blood pressure. Histamine-related symptoms can also occur without a diagnosis of MCAS.
For some individuals, foods trigger reactions that feel unpredictable. A food tolerated one day may cause symptoms another day. It can feel like a constantly moving target.
Over time, eating can become associated with fear, and the list of foods someone feels comfortable eating may become increasingly limited.
Medical Trauma: When Patients Stop Feeling Heard
Chronic illness can involve traumatic injuries, complicated surgeries, painful procedures, medical errors, and negative healthcare experiences. One of the most difficult experiences is not being believed. Many individuals spend years searching for answers, undergoing testing, and being told their symptoms are simply anxiety or psychological.
For someone with an eating disorder, additional medical symptoms may be attributed entirely to their eating disorder, even when another condition is present.
Repeated dismissal, medical gaslighting, can contribute to mistrust, anxiety, and reluctance to seek care.
By the time someone enters eating disorder treatment, they may already feel exhausted by the healthcare system. What appears to be resistance or noncompliance may reflect previous experiences of feeling unsafe, dismissed, or unheard.
Before labeling someone difficult or resistant, consider what they may have experienced.
Food Rules: Protective or Restrictive?
We all have food rules. Some come from family traditions, culture, personal preferences, or routines. Others develop through diet culture, social media, medical recommendations, or past experiences.
For someone with chronic illness, certain food rules may serve an important protective purpose.
Avoiding a confirmed allergen, modifying food textures, or adjusting meal timing may be medically appropriate.
However, rules can become increasingly restrictive when fear leads someone to avoid more foods than medically necessary.
The goal isn't to eliminate every food rule. It's to understand which rules support health and which unnecessarily limit nourishment, flexibility, and quality of life.
When Intuitive Eating Isn't So Intuitive
Intuitive eating encourages individuals to reconnect with hunger, fullness, and internal body cues.
But what happens when those signals aren't reliable?
Nausea, digestive symptoms, medications, fatigue, and autonomic dysfunction can interfere with hunger awareness. For some individuals, waiting until they feel hungry may lead to inadequate nourishment.
This is where mechanical eating, following a planned schedule of meals and snacks, can be helpful. Conscious, intentional eating can also support recovery when hunger signals are difficult to recognize.
Eating on a schedule doesn't mean someone is failing at recovery; the definition of recovery is fluid and individual.
Body Image, Movement, and the Grief of Chronic Illness
Chronic illness can significantly change someone's relationship with their body.
Individuals may grieve abilities they once had, struggle with unpredictable symptoms, or feel disconnected from a body that no longer functions as expected.
Body image also involves physical functioning, independence, identity, and fears about future health.
Movement can become complicated when chronic pain, joint instability, or exercise intolerance makes physical activity uncomfortable or unsafe.
Repeated negative experiences may contribute to fear of movement due to anticipated pain or injury.
Rather than immediately encouraging joyful movement, it may be more appropriate to begin with neutral movement, activities that feel manageable, purposeful, and medically appropriate.
The goal isn't to force someone to trust a body that has repeatedly caused pain. It's to gradually rebuild confidence and connection while respecting physical limitations.
Medical Skill Building and Self-Advocacy
Medical skill building helps individuals feel more prepared and confident navigating healthcare.
This includes organizing symptoms, preparing questions, identifying priorities, practicing difficult conversations, communicating boundaries, and recognizing when to seek additional support.
Practical tools such as a Medical Appointment Planning Worksheet, a "Please Don't Weigh Me Unless It Is Medically Necessary" card, or a "Please Consider a Hands-Free Assessment" card can help communicate needs during appointments.
The goal isn't to make individuals medical experts. It's to empower them to become active, informed participants in their care.
Additional Strategies to Support Recovery
Recovery often requires flexibility, self-compassion, and practical support.
Grounding, meditation, affirmations, assistive devices, and appropriate complementary therapies may help manage distress and improve daily functioning.
Healing in community matters, too. Support groups, meaningful connections, and practicing how to ask for help can reduce isolation.
Changing the relationship with your illness can also be valuable. Rather than viewing your body as the enemy, consider developing a more compassionate narrative and naming your illness.
During setbacks, new diagnoses, or surgery recovery, lean on your treatment team and return to recovery essentials, such as meal plans, rest, boundaries, and calming activities.
Other approaches may include CBT for chronic pain, EMDR for trauma, and setting realistic SMART goals. The goal is neutrality with food, body image, and movement, not forcing yourself to feel positive all the time.
Treating the Whole Person
Effective treatment requires collaboration among medical providers, eating disorder specialists, registered dietitians, mental health professionals, and other appropriate specialists.
Treatment must remain individualized, flexible, and responsive to changing medical needs.
Healthcare professionals should look beyond behaviors and ask why someone may be restricting food, avoiding movement, or struggling with recommendations.
Recovery Is Not a Straight Line
Living with chronic illness can feel like walking a tightrope between managing symptoms and maintaining nourishment, protecting your body and rebuilding trust in it.
There will be setbacks, changing symptoms, new diagnoses, and times when previously helpful strategies no longer work.
Recovery and chronic illness management are rarely linear.
We need to move beyond asking whether symptoms are medical or psychological and recognize how deeply interconnected physical health, emotional well-being, and eating behaviors can be.
Recovery doesn't require the absence of chronic illness.
It means learning to care for yourself, advocate for your needs, adapt to change, and build a meaningful life alongside your condition.
We don't have to wait until we "feel better" to begin eating disorder recovery or live a full life.
Sources:
Baeza-Velasco, C., Tasa-Vinyals, E., Espinoza, P., Guillaume, S., Mora, M. S., Bulbena, A., & Lorente, S. (2026). Insights in altered eating behaviors in women with Ehlers-Danlos syndromes. Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity. https://doi.org/10.1007/s40519-026-01872-2
My doctors could not see past my eating disorder - The Ehlers Danlos Society. (2020). The Ehlers Danlos Society. https://www.ehlers-danlos.com/story/adele-e/
Benjamin, J., Sim, L., Owens, M. T., Schwichtenberg, A., Harrison, T., & Harbeck-Weber, C. (2020). Postural Orthostatic Tachycardia Syndrome and Disordered Eating: Clarifying the Overlap. Journal of Developmental & Behavioral Pediatrics, 42(4), 291–298. https://doi.org/10.1097/dbp.0000000000000886
Gaudiani, J. L. (2024). Sick Enough: A Guide to the Medical Complications of Eating Disorders and Undernutrition (2nd ed.). Routlede.
Tamie Gangloff, M.A.
Author, Educator & Speaker
About the Author: Tamie Gangloff, M.A. is a Clinical Outreach, Education & Sponsorships Representative with Hidden River Eating Disorder Treatment Center, as well as an author, educator, speaker, and advocate.
Tamie earned her Master’s degree in Clinical Psychology from Antioch University and has worked across all levels of care in eating disorder and substance use treatment. She is an advocate with the Eating Disorders Coalition, founding president of the Southwest Philly and Central PA iaedp Chapters, former group leader for The National Alliance for Eating Disorders, and Medical Trauma Advisor for Root to Branch.
Drawing from both professional expertise and lived experience, Tamie focuses on the intersections of chronic illness, eating disorders, medical trauma, body image, and resilience. She is passionate about bridging the gap between physical and mental healthcare, increasing awareness of often-overlooked medical conditions, and promoting compassionate, individualized care.
Tamie has presented nationally and internationally for organizations and conferences including iaedp, SOSORT, MEDA, and The National Alliance for Eating Disorders.
Tamie is the author of Chronic Illness and Eating Disorders: Assessment, Clinical Skills and Lived Experiences, a resource exploring the complex relationship between chronic medical conditions, mental health, and eating disorder treatment.