What Does It Mean To Be (and When Can You Say You Are) "Healed" From Chronic Illness?

After my articles over the last two weeks, in which I shared about my foray into trying to fuel myself on vegetable proteins and I then shared about the experience of having Mast Cell Activation issues, I received the following comment:

“If you claim to have healed yourself from chronic illness, how come you still can’t eat those foods without symptoms? If you’re healed, how come you still react and have the mast cell syndrome stuff? Surely that’s not being healed.”

This is, actually, a very legitimate question. My own contemplation of this question has been a constant feature over the last few years. When am I ‘better’, what is ‘better’, can I call myself ‘better’ if I still don’t eat x, y or z? What is ‘healing’ - and is that different if your conditions are genetic, autoimmune, infectious, complex or chronic?

I also know that there are questions over whether I can legitimately say I’ve ‘recovered’ when I know what I deal with on a daily basis - and it’s not what anyone else might consider ‘normal’. I know that my life is still structured around specificity when it comes to certain things, especially the nutrition I consume.

I do wonder whether I need to eat more foods in order to be allowed to say I’m ‘done’ (spoiler alert: the answer is yes), and if so, how many foods are ‘enough’ to declare this process ‘complete’ (spoiler alert: it’s not ‘all of them').

Then there’s the semantic differences between the words ‘healed’ versus ‘in remission’ or ‘symptom-free’... what can we expect with chronic illnesses? Is there even a difference between these terms? What on earth does ‘healed’ even mean?

PERSPECTIVE - IT’S ALL RELATIVE

I have come to recognise, in my time working on my own conditions and those of hundreds of clients, that ‘healing’ and ‘health’ can only ever be relative. In my early days of being a practitioner I would sometimes wonder why my clients were fussing about a symptom I viewed as minor, or celebrating a victory that didn’t seem like a particularly big deal to me.

I quickly realised that illness (and therefore health) can only be measured against internal metrics.

If you have been lucky enough to be blessed with not having been that unwell, minor dysregulations of biology can feel utterly destabilising. This is not ‘less’ of a problem than someone else’s issues - it’s a different problem, perhaps, but no less important or impactful. Likewise, if you’ve been seriously ill feeling slightly unwell is bound to not seem like a problem to you.

How you measure health, therefore, must be entirely individual - and it is likely to be dependent on what level of wellness has gone before.

When asked to define ‘healthy’, esteemed professionals and scientists struggle and disagree. They find it hard to establish just one explanation of what healthy is - because health is entirely relative. It is also on how people actually feel inside their own bodies. And though we can explain how we feel we cannot ever feel the way someone else feels, physically.

Within this arena of vague definitions I am a big believer in the instinct of the biology: the body tells the truth. If your body feels well then it is more than likely well. If it is manifesting symptoms or illness then it is showing you something - probably an area where it is distressed.

This means that as a Functional Medicine practitioner I put a lot of store by someone not feeling quite ‘right’ and sensing that something is ‘off’. Even when conventional tests are supposedly ‘normal’, it is these early warning signs of slight hiccups in the flow of our own energy that are the signposts that something needs dealing with and should not be ignored.

But the converse is also true. For those who have dealt with major distress and physiological malfunction, slight warning signals are actually an improvement. Being ‘slightly off’ when you’ve been really ill is actually a relief - and I put great store by the stories of someone’s sense of relief when a symptom lessens in intensity. I’m not looking for miracles (though they’re always nice) - I’m looking to move the needles towards a place of more comfort and peace within one’s own body.

So when I discussed the vague (and to be honest, slowly realised) slight off-ness that I felt as I tried to bring legumes and other plant proteins back into my life, this represented a HUGE improvement on what happened last time I ate these foods. Everything that I go through as food reactivity or slight digestion/immune issues is an upward trajectory AWAY from my darkest times. That doesn’t mean it’s always easy, but it does mean that relatively-speaking, I am healthy… For me.

But am I ‘healed’? I personally would say that I am in a strange place where I am as healthy as I can possibly be for this point in my life.

LONG-TERM, WHEN HEALING IS CONTINGENT ON THE REMOVAL AND ELIMINATION OF STRESSORS… IS THAT REALLY BEING ‘HEALED’?

Chronic illness is variable and mutable - and despite previously holding out hope that ultimate healing for me would be a completely liberated diet, I have actually accepted that I will have lifelong immunological responses to several key foods - even without my longterm dental work (discussed further below under "Perpetuating Factors".

And yet there is a difference between a few, important triggers which you avoid and the mass immunological and inflammatory response that occurs when a body has developed a response pattern of heightened reactivity to external stressors.

The line between healthy and controlling is complicated to find. Moreover, the line moves. Control is often the route to finding health, but taking the security blanket of control (usually via exclusions) away can feel destabilising.

I do believe that living a life based on extremes of avoidance and elimination is not actually ‘healthy’, it is stressful and rooted in fear. I remain convinced that feeling ‘healed’ is actually about finding parameters of behaviour which feel OK to live within, regardless of underlying conditions or historical illnesses.

This goes all the way back to where I started this article. The body tells the truth. If you feel stressed, undernourished, restricted, frustrated, uncomfortable, ill-at-ease and dysfunctional… this is not health. If, however, you are consciously aware of your limits whilst feeling, for the most part, at ease within your body then this is a real mark of being well - and ‘healthy’.

And yes, this may mean that to maintain health you must steer clear of certain food triggers. Having these triggers is a function both of genetics and of experiential, immunological memory. It is neither a failure, nor evidence that you are not yet ‘healed’.

We must always recognise that to go through illness means our body and biochemistry goes through a process. We cannot expect NOT to be changed by that and part of that change may include immunological memory to the occasional food trigger.

This is not to advocate staunch avoidance of multiple foods forever, it is a balanced reflection that ultimate healing doesn’t lie at the destination of returning to the body and the diet that you were in previously. It must always be remembered that the body that you were in before, with the diet that you were consuming then, was the body that became ill in the first place. Having been unwell means having been changed - so ‘healed’ isn’t supposed to mean ‘back to normal’, i.e. how you were.

IS ALL HEALING CONTINGENT ON THE REMOVAL OF FOOD STRESSORS - AND IF YOU’RE NOT ELIMINATING FOODS AND STILL SYMPTOMATIC, ARE YOU FAILING?

An article like this wouldn’t be complete without stating that my discussion of health being achieved through the avoidance and/or inclusion of foods is because I realise that health and healing for me (and countless clients) comes as a result of understanding the role of nutrition in symptoms. And yes, for me it is the nutrition tool that I manipulate in order to regulate the sensitivity that is perpetuated by other factors.

There are people - individuals even with my exact diagnoses - who argue that their diet is not a lead domino in their health picture. They lament openly that it is negligent to discuss the promise of food as medicine and criticise those who promote nutritional approaches to assist with symptoms.

I don’t believe they are right, and many of these people still have multiple symptoms and suffer with their conditions. But I don’t exactly believe they are wrong either - because I know that many of them feel they have tried the dietary manipulation approach without success.

My health is contingent on finding a way to nourish my body without overtly stressing it. For me (and for many, many individuals) a lot of the immune triggers are nutrition-based and a lot of the salves to the stressors and the symptoms can be found in food. In this way - food is medicine and elimination and inclusions really do provide for health.

But this is by no means the ONLY thing that maintains my wellness - and I often argue that my attitude and psychology are actually the bedrock to my wellbeing, not my diet. If my food was the only thing that determined my symptom remission I’d be a lot more ill than I currently am.

And yet, there are those for whom their major triggers are not nutritionally based. For these individuals the nutrition piece may be less impactful, and dietary restrictions less necessary/appropriate/revelatory. Moreover I know that some people who have chronic illness have also struggled with dietary rules fuelling disordered eating in their past.

For these individuals, their liberation from dietary dogma may be their ‘healing’ victory - and even a marker of how ‘well’ they are doing which uses how much they feel ‘free’ when they eat foods as a marker of success. This is just another example of how one person’s ‘healed’ is another person’s prison.

(Side note here: if any chronic illness bloggers who do take against the ‘food heals’ approach are reading this, you are very welcome. Please know that I hear what you are saying when those who proselytise diet as therapeutic try to force compliance on you and promise you a ‘resolution’ through avoidance. Being offered someone else’s miracle (with the implication that your refusal to comply means you are choosing to retain your illness) can be a deeply distressing act.

And yet, this does not mean in any way that some people - particularly people like me whose issues emanate from GI trauma - are not enormously benefited, indeed ‘healed’, by their dietary choices. Just because it isn’t true for you does not mean you need to pour vitriol on the stories of those for whom dietary specificity IS their freedom…)

All of this means that much of being ‘healed’ involves what afflicted you in the first place, and how deeply.

My personal health is still an evolving journey and it revolves around my finicky and unpredictable mast cell responses to stuff. So how can I say I’m healthy when I’m still being much more specific than I’d like to be?

Therein lies the distinction of Perpetuating Factors. These are the things that maintain symptoms whilst the original issues have been understood - and possibly even addressed.

PERPETUATING FACTORS - WHEN STILL HAVING SYMPTOMS DOESN’T MEAN YOU’RE NOT BETTER

If we acknowledge that the body tells the truth and if I was my own client I would suggest that I still had some issues that need addressing.

My own need to avoid many things at the moment does not, in my eyes, suggest that my systems are working well. My ‘health’ is founded upon striking a VERY fragile balance of nutritional and lifestyle factors - with a level of attention and specificity that I actually advocate against. Even with the diagnoses that I can do nothing about, being completely better (not healed, but actually recovered) for me would require being able to be more flexible than I currently am within my food and lifestyle choices.

This highlights my inner belief about health - that it cannot be founded upon stress, control, anxiety and paranoid avoidance of potential triggers. Anyone who has read anything I’ve ever written will know that I’m a staunch advocate for as broad a nutritional freedom as possible, not punitive nutritional restrictions. I do NOT believe that health should be constructed on a thin veneer of coping mechanisms and restrictive diets… and yet… my own health currently is.

But … there are, for me, Perpetuating Factors.

I am having to be really careful - more careful than I used to be and more careful than I’d like to have to be - with my diet at the moment. The amount of avoidance I am maintaining is unnatural and, for many others, I would class it as ‘unhealthy’ - evidence of me over-controlling outer variables as an attempt to regulate my inner environment.

But I am doing all of this in a very conscious way because I’m still in the midst of over three years (and counting) of intensive and intrusive dental work. Though I am nearing the conclusion of this, I am actually in one of the most neurologically and physically challenging parts, wearing fixed braces, strong wires, a plastic mouthpiece and several elastics.

Not only is this a hell of a lot of external ‘stuff’ affecting my body (by being in my mouth 24/7) but the whole contraption is specifically designed to exert some fairly extreme forces on my jaw. It is thereby affecting structural integrity, the literal shape of my mouth and head and my nervous system.

All of this is a recipe for two things: stress and inflammation.

I have discussed the reasons behind my choice to do this dental work here. I’m still utterly convinced that it was the right thing to do - and every time my jaw alignment gets a little closer to where it ‘should’ be the change in the rest of my physiology is profound.

But that doesn’t take away from the fact that this sort of thing comes with collateral damage. And the main thing it affects is my nervous system and my immune system - thereby turning an already sensitive body into one that is precariously teetering on the edge of reactivity at all times. In this situation, my level of care and attention ISN’T over-controlling, it’s the only sensible (and a highly necessary) safety precaution.

This doesn’t take away from how ‘healed’ I am - it actually suggests that the ability to make choices which maintain equilibrium (mostly) whilst going through such distress is a remarkable achievement in my health journey.

That said - it won’t always be like this. Being ‘healthy for me at the moment’ does not mean that I am ‘settling’ for the restrictions of nutrition and lifestyle that I am currently following. I know that, for about the fifth time in my life, once the dental work is over (towards the end of this year… yay!) I will have to relearn my boundaries and my digestive parameters all over again. I know that I may be able to eat much more broadly without suffering consequences… and the responses to plant proteins that I wrote about in my article a few weeks ago may totally change.

And yet, the ONLY sensible approach when you have a sensitive immune and nervous system is to control the variables that you can control - and that make a difference - in order to provide yourself with wiggle room for the ones that you can’t… whilst all the time working on the reasons for the immune and nervous system to be so hyper-sensitive in the first place.

And, in case you were wondering, even with the extreme care I am exerting, I am still holding onto a lot of excess inflammatory weight gain, my skin is struggling with pigmentation and breakouts, my joints are crazily vulnerable and I am physically sick relatively frequently (though nowhere near as much or for as long as when I’m not being careful).

But even with all of the above happening I still class myself as (mostly) in remission because I’m no longer emaciated, I am no longer sick after every single meal, I can actually digest food now and I don’t break out in hives every other day.

And yes, the other thing that makes me ‘healed’ is that I know exactly what’s going on and all of the management strategies required to deal with it.

Which leads me to what my personal definition of healing is. Perfecting your biology is not the point.

Being ‘healthy’ or ‘recovered’ for those with chronic illness is much more about having developed the self-understanding and self-awareness to know your body, how it works and what affects it. And then, having the grace to treat yourself the way you need to in order to live a full and fulfilling life.