Not Sick Enough
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 in recovery.
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 one has 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 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 7 billion 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 our culture on being thin and how that makes one a better person. A dramatically low weight also tends to be what people stereo-typically 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 (the least common eating disorder). If this is all we see represented, this is all we think there is which contributes to people feeling as though they don't fit that one specific description of an eating disorder and thus, that they do not deserve help unless they do.
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 how an eating disorder can impact a person's body, but that's what we tend to prioritize to begin with, the things we can see and measure.
This ties back to a previous blog post I made regarding Western medicine's prioritization of objective and measurable data. In healthcare we tend to focus on things we can measure or describe in a numerical manner (weight, laboratory values, electro-diagnostic studies, 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.
It is important to note that we have made progress in beginning to incorporate other evaluative criteria into clinical guidelines, for example B.C.'s Clinical Guidelines (2012) also look at a person's motivation for treatment and the ways in which their disorder is impacting their life (beyond simple physical consequences). I still think there's improvements to be made, but it's encouraging that we are taking steps even if we have many more to take.
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 wait-lists unless they crash physically and are brought to hospital. 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.
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, physiological parameters are also a useful tool, but are only part of the whole picture of a person struggling with an eating disorder
This idea of not being sick enough plagues people and I wish there were an easy solution to overcoming it. To do so we need to tackle issues in healthcare and our culture that are far beyond the individual. This is challenging but possible. It will just take work. An easier place to start is with the individual because as individuals we have the power to remind ourselves (even if we don't believe it) that there is no "sick enough," there is only having enough of being sick. Have you had enough?
- S. Ritchey