Healing diets, Orthorexia and the reality of chronic illness.

Every now and then, someone sends me an article or refers me to posts that state that healing diets like the AIP (Autoimmune Paleo), or the Wahls’ protocol or SCD (Specific Carbohydrate Diet) cause an eating disorder called Orthorexia.

The article is generally either an implication or an outright accusation that the diet is causing more harm, worsening health and creating a “potentially dangerous eating disorder” called Orthorexia.

So what is Orthorexia?

Orthorexia is a term created by Steven Bratman (MD, MPH) in 1996 to describe what he saw as “an unhealthy obsession with eating healthy food.”

It is important to note that Orthorexia is not listed in the Diagnostic and Statistical manual of mental illness disorders, created by the American Psychiatric Association, currently in version 5, nor is Dr Bratman sure that it should be.

Read the article I reference and quote from here.

Despite not being listed in the DSM-5, the term Orthorexia is being used by many treatment centres and mental health professionals as one of the eating disorders that they see and treat and the use of the term has become more widespread in the general population.

The fear of developing Orthorexia is often being used to warn people against using a healing diet to manage and reverse symptoms of chronic autoimmune disease.

So let’s get clear on what Orthorexia actually is direct from the man who coined the term in the first place.

According to Dr Bratman,

..those with orthorexia constantly struggle against feelings of being unclean or polluted by what they have eaten, no matter how carefully they monitor their diet…….an orthorexic feels compelled to achieve ever great heights of dietary perfection; to feel entirely clean, pure and transparent.”

There is a spiritual or “purity” focus on this condition where the food becomes the primary source of meaning, happiness or purpose, to feel better than others, and to paraphrase Dr Bratman, ‘having a compulsive need to cleanse when straying even minimally from the chosen diet or using the diet as the only means of dealing with the challenges of life’.

Dr Bratman also states: “…I do not, and have never claimed that vegetarianism, veganism, or any other nutritionally sound approach to eating healthy food is in itself a disorder. That would be absurd! Nor do I think that people who pay close attention to labels on the foods they mean to purchase are demonstrating a psychological problem (as some web articles on orthorexia would appear to imply.) Finally, I entirely agree that the problem of addiction to junk food is immensely more prevalent than obsession with healthy food.”

The majority of the healing diets to help people reverse chronic autoimmune conditions fall squarely under “a nutritionally sound approach” considering both the ongoing research and experiential evidence of well qualified people like Dr Terry Wahls and Dr Sarah Ballantyne, who both live with chronic autoimmune conditions that they are actively managing.

They both understand the reality of life with chronic illness and promote not only diet, but various different wholistic lifestyle changes that will help to maximise your best possible health and happiness.

Where does Orthorexia fit with a healing diet?

When you go outside of the norm, people feel intensely uncomfortable.

If I sat down with the average nutritionist and told them how I eat they would be shocked and then very concerned that I have Orthorexia. The normal view is that cutting out whole food groups is dangerous and could lead to serious issues down the track.

However when you live with chronic autoimmune disease, you understand that the very real concern is either “being glutened” which is an actual risk when you eat outside your home, especially when you have Celiac disease like I do or accidentally ingesting a food that creates an autoimmune flare in your body.

Over the past 5 years I have had to have many conversations with well meaning and concerned friends and family members because of the way that I eat.

Even though they have seen me go from physically and cognitively disabled to where I am today, they still find the way I eat to be very strange, probably unnecessary and beyond their understanding.

What is most important for me though is that it continues to give me remission of the majority of my symptoms and I feel and function better each year.

Many health and nutrition professionals will wave the red flag of orthorexia if you mention cutting out whole food groups as I have because many health and nutritional professionals do not believe that what you eat has any impact on how you feel or that it will help chronic autoimmune conditions.

They don’t understand chronic illness because it is one of the few things that you really need to experience in order to truly understand the enormous impact that it has.

The reality of chronic illness is that it completely changes your life.

When you become chronically ill, everything changes.

Doctors gaslight you and tell you that your symptoms are all in your mind or refuse to do testing that you need to get a diagnosis.

You feel like you have lost yourself.

All of the things that you used to be able to do, the future you planned for yourself, the constant reminders of how different your life is now, can create so much grief and loss and hopelessness that your partner, family and friends simply can’t understand.

People in your life can begin to think that you are just lazy and using this “illness” as an excuse to get out of things.

Even when you do get a diagnosis, there is so little help out there, medications can have profound side effects and autoimmune disease currently has no cure.

You are left with debilitating symptoms, pain, inflammation, disability that ranges from slight to profound, mobility issues, brain fog, fluctuating energy and worst of all, you generally look the same as you did before because most chronic illness is invisible.

You can face financial hardship from expensive medical bills and your inability to work and make an income.

You can face social isolation from friends who seem to fade away when you have to keep cancelling plans and partners who grow resentful at all of the additional workload that they have to cover now because of your illness.

You can experience crippling guilt at the impact your illness is having on the people that you love.

Add to that the fear and uncertainty that comes when nothing about your life is predictable or certain and you are pretty much left to find your way alone without guidance and support.

That search leads you to information about using diet to help your body reduce inflammation, reverse disease progression and more importantly, feel better and there are huge communities out there with people looking for support, desperate to start healing and this is where the trouble begins.

It is human nature to think that if something worked for you, it will work for everyone else.

It is also human nature to believe that there is only one perfect way to get that solution, follow that protocol, support a particular political ideology or even practice a particular faith and if you do not agree or you do not get the same results, you  are blamed, scorned or met with hostility and judgement.

If you have been part of any Facebook group, then you will have had that experience.

Groups are hard to manage, most people are conflict averse and group admins don’t know how to deal with issues that arise.

Strong personalities begin to dominate, bullying and drama ensue and the only way you can feel part of the group is to go along with the “right way” or face being banned from the group.

Here is how it generally plays out with healing diet support groups:

• You join the group, desperately seeking help and support to feel better and get your life back.
• You follow the diet to the best of your ability but nothing seems to be changing and you feel worse.
• You seek support in the group and they question if you are “doing it right” because if you were “doing it right” you would be feeling better.
• You become determined to “diet harder” so you restrict more and become more anxious about food.
• Dieting harder doesn’t seem to be working and when you seek support you get attacked, blamed, shamed or called a liar and that experience creates more anxiety, emotional pain and isolation.

No matter the support group, whether it is for specific disease, profession, religion or parenting, you will meet people who believe that their way is the right way and you are doing it wrong and they will have no hesitation in telling you so.

The truth is that there is no one dietary protocol that will work for every single person with chronic autoimmune disease.

No matter what protocol you choose, you will need to experiment, tweak and trial things to see how they work for you.

When it comes to chronic illness, trusting and believing in your own lived experience and advocating for yourself is absolutely essential.

Here is how to get the best from the healing diet that you choose.

• Do your own research. Find the person behind the protocol and read what they have to say for yourself and evaluate if it sounds do-able for you.
• Make sure that you fully understand the process of reintroduction of food. Take it slowly with one reintroduction at a time so that any reactions in your body can be clearly experienced.
• Do not rely on diet alone. Most healing protocols are about much more than diet and include lifestyle changes like reducing stress, having good sleep hygiene and changing your mindset.
• If a support group feels bad, leave it or change your expectations of the group. I have been in a disease support group where no one was allowed to mention diet because the founder of the group believed that a particular thyroid replacement hormone was all you needed to improve. They had great advice on thyroid issues that were helpful to me and I found another group where I could talk about diet.
• Fear of reintroducing foods is completely normal. With time and patience and listening to your body, you will begin to relax more, broaden your range and see what best works for you.
• Before you begin the healing diet, create a master list of every single symptom you have, including your energy levels and state of mind. When you start worrying that the diet isn’t helping, get out the list and see if any of your symptoms have gone. Without my list, I would have been tempted many times to give up because we can’t objectively see our progress.
• Don’t diet harder! Either because you think you might get even better results if you restrict more or because you feel like you are not doing it “right.”
• If you feel that your anxiety or fears about food are getting out of hand, seek professional advice, especially if you have had issues with disordered eating in the past.

Here are some questions that Dr Bratman suggests that you ask yourself if you are concerned that you have Orthorexia:

1.  Do you turn to healthy food as a primary source of happiness and meaning, even spirituality?
2.  Does your diet make you feel better than other people?
3. Does it interfere with relationships or work, friends or family?
4.  Do you use pure foods as a sword and shield to ward off anxiety, not just about health problems but about everything that makes you insecure?
5. Do foods help you feel in control more than really makes sense?
6. Do you have to carry your diet to further and further extremes to provide the same kick?
7. If you stray even minimally from your chosen diet, do you feel a compulsive need to cleanse?
8. Has your interest in healthy food expanded past reasonable boundaries to become a kind of brain parasite, controlling your life rather than furthering your goals?

Most importantly, if someone is suggesting that you have Orthorexia, check the source of your information.

• Does that person live with chronic autoimmune disease, and therefore has an understanding of the impact of food on autoimmune flares and how profoundly it can affect how you feel and function?
• Are they attempting to sell you their own solutions through fear based marketing by casting doubt on what they see as “the competition”?
• Do they have an understanding of the healing diet protocol, the dietary phases and the lifestyle changes that need to be made?

Remember that chronic illness is completely life changing and nothing in your life so far could have possibly prepared you to deal with it.

It is an ongoing journey than can be confusing, isolating, overwhelming and frustrating.

Trust yourself and trust how you feel.

If you are struggling and need emotional support, skills and clarity, book your FREE Discovery Session with me and let’s talk about how I can help you get your life and health back in your control.