Those three words, "not sick enough."
I have heard this phrase again and again from those struggling with eating disorders. In fact, there is not a single person I can think of who has ever proclaimed they felt "sick enough." It is one of the most common experiences people with eating disorders describe, but what do they mean by not sick enough? What is sick enough? Good question... There is quite a bit behind this seemingly simple phrase that is important to explore.
Validation
Broadly speaking (and in my own experience of course), "I am not sick enough" generally translates to "I do not feel valid and/or deserving of support (love, recovery, etc.) Sometimes people will say they do not feel sick enough directly; other times they will communicate this feeling in more indirect ways, but in the end, the person is still generally expressing that they do not feel worthy of help. People with eating disorders tend to have low self-esteem and it becomes incredibly difficult to validate oneself and one's experiences when you have low self-esteem, thus people often seek validation from others (although it is never truly satisfying to the person because it can never be fully accepted. They have to learn to give it to themselves and this may be a lifelong learning process.)
Identity & Competition
Often people who are struggling with an eating disorder have a great deal of their identity and self-worth wrapped up in their illness, this is part of the reason there is such a competitive aspect to these conditions. It is hard to explain both the genuine concern for others struggling, especially when they seem to be struggling "more" than us, and the feelings of jealousy that arise. Feeling jealous of someone else's illness (or rather what it does for them) can bring up a great deal of shame because we know (intimately) the true horrors of an eating disorder and yet, we still feel jealous at times, despite knowing better. Jealousy is of course a basic human emotion and it tells us something about ourselves, our recovery journey, and also the society in which we live (a society that emphasizes standing out among billions of people in order to matter at all).
It's important to note that jealousy occurs most often in regard to specific behaviours (i.e. restriction and over-exercise) as well as lower weights. Why? Because those are the things that our society places value on. Again, this ties in to how "thin" is associated with "control" and "happiness," etc. It's this kind of valuing that leads to a dangerous (and often unspoken) hierarchy of eating disorders which is incredibly damaging to those in recovery.
Healthcare's Focus on Physical Health
There is so much emphasis in Western society on being thin and how that makes one a better person. A dramatically low weight also tends to be what people stereotypically associate with eating disorders and that provides a certain amount of validation. This is also what the media tends to portray: a romanticized version of eating disorders that only showcase certain aspects of anorexia nervosa (which is not the most common eating disorder diagnosis despite what people might assume.) If this is all we see represented, this is all we think there is, which contributes to people feeling that if they don't fit that one specific description of an eating disorder, they do not deserve help (or even have a problem.)
If people can see your struggle, we can start to believe it is more significant, more "real." And yes, some people with eating disorders do lose weight, but some also gain weight, fluctuate in their weight, or stay the same weight. The thing is, you cannot easily see how an eating disorder impacts a person's life. Unless you're looking very closely, you cannot see how their mood, their relationships, their ability to participate in everyday life, or how their thoughts impact them and those around them. It's only occasionally that you can see the impacts of an eating disorder in a visual way, but these are often not the most representative of the damage an eating disorder can do; of the suffering they cause (that isn't objectively measurable.)
In Western medicine we tend to focus on things we can measure or describe in a numerical manner (weight, laboratory values, etc) and for important reasons. The issue is that to someone struggling with an eating disordered mindset, these things become the A+, the gold medal, the first place they are striving for. In some sense, these numbers validate a person's illness because they're what we prioritize and thus they are often used to support clinical guidelines around how much support a person will receive. This makes sense, but you can see where it starts to become a problem in that it reinforces the deeply ingrained idea that the person needs to become physically compromised in order to receive support and in some sense, they do.
While I don't particularly like the comparison between cancer and eating disorders because they are drastically different diseases, there's still something significant about comparing the approach we take to them: laying the approaches to treatment side-by-side and questioning what it says about our healthcare system. Imagine you are diagnosed with stage one cancer, it would be bizarre for you to believe (and the healthcare system to reinforce) that it needs to get to stage four before a response is warranted. That does not make any sense and it would be horrifying if that was our approach to treating cancer.
That is however, our approach to treating many mental health conditions, even life threatening ones such as eating disorders. Again this comparison is limited because these are drastically different conditions, but it is something to think about.
I think this kind of comparison is a good way to explore how healthcare often focuses on mitigating illness, but does very little (partly because of limited funding) to support wellness. We tend not to act until a problem is significant, while it would make more sense (and potentially save more money in the long run) to put more into upstream, preventative approaches.
This is not just an issue in Canada either. In the U.S., insurance companies use physiologic parameters to determine coverage for individuals seeking treatment. In the U.K., there is a similar struggle as compared to Canada in terms of limited resources in a publicly funded healthcare system, which means people are placed on long waitlists to receive treatment unless they are significantly physically compromised. By that point there is so much more work to do, to get the person back out of the hole they are in. More than likely they will be discharged once they are physically stable, go back to an environment with limited supports, relapse, and repeat. This cycle likely costs more in the long run. The challenge is finding a way to show this numerically.
All of this serves to reinforce the priority of physical (demonstrable) illness. Patients become quite focused on their weight, their BMI, their blood work, their heart rate, etc. Any kind of number they can focus on becomes problematic. The thing is, many people's bodies respond differently to an eating disorder, there are so many factors (the behaviours used, the age of the person, their genetics, their environment, their length of illness, co-morbid issues, etc.) Some people's bodies will react dramatically to eating disorder behaviours: their blood work will show up with abnormal values, an ECG might show significant cardiac changes, etc. Other people's bodies will react differently. Neither case is more or less deserving of support.
Some studies have looked at how effective blood work is in terms of evaluating patient's health and found that more than 50% do not have abnormal blood work even in the context of severe illness (NCBI, 2011). It is important to note the study referenced here only focuses on anorexia nervosa and EDNOS (now known as OSFED), and the parameters around these diagnoses have changed since this study was done. Studies such as this are important, but again, do little to take into account the life impact and psychological distress that eating disorders also cause. Blood work is certainly a useful tool, as are physiological parameters to some extent, but these are only part of the whole picture of a person struggling with an eating disorder
It is easy to tell patients that there is no “sick enough, only having enough of being sick,” and this is true (and important for individuals
to remember), but we cannot stop there. We have to go deeper and ask ourselves what are the ways in which a healthcare system (and limited mental health supports) focused on mitigating crises, rather than supporting wellness, reinforce these entrenched beliefs.
Until we are adequately supporting people with upstream resources that allow them the opportunity to remain in their community, surrounded by their support networks, and able to apply skills to their day-to-day lives, we will be perpetuating the truth that suffering which is more objectively measurable in the eyes of Western medicine, is more “real” and deserving of resources.
We cannot simply tell patients that there is no “sick enough” unless we are also actively deconstructing the system flaws (or setup) which perpetuate this notion.
- S.
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