Eating disorders are epidemics across the majority of the world and prevalence rates are, unfortunately, ever increasing. This is problematic not only because of the emotional, social, academic, physical and financial tolls that eating disorders take on those that suffer and their families, but also because eating disorders are also the most lethal of any mental illness.
Professionals who work with eating disorders face the pain and intractability of these illnesses every day. We wish for cures that are non-existent and we do the best that we can to help the clients that come to us. Most who get treatment will be ok; some will not. Current research suggests that between 50-80% of eating disorders are in some way related to genetics (www.nationaleatingdisorders.org, 2021) but there is always more to the puzzle. Lynn Grefe, former CEO of the National Eating Disorders Association, used to say, “Genetics loads the gun, and environment pulls the trigger.” For most people with eating disorders, this rings true.
We know from research that prevalence rates are increasing. We know that eating disorders come in all shapes and sizes. We know a lot – at least a lot more than we used to.
What we didn’t know was that a pandemic was coming.
And that has changed the face of treating eating disorders. It has changed the profile of the client with an eating disorder. It has changed the accessibility of necessary treatment. It has changed the triggers that our clients face. It has changed the ways existing treatments work.
Eating Disorder Overview: there are a variety of different types of eating disorders, descriptions of which are beyond the scope of this post but are easily google-able. Typical types of treatment include cognitive behavior therapy, dialectical behavior therapy, exposure and response prevention, nutritional intervention, medical monitoring and potentially medication management. Research has shown that the most effective way to treat an eating disorder is with a “team approach.” The team is usually made up of some combination of primary therapy, nutritionist/dietician, medical doctor, and psychiatrist. The lowest “level” of treatment is outpatient which is conducted while the patient remains at home and is involved in all other aspects of his/her life. If this proves ineffective or not intense enough, the client is usually moved to an intensive outpatient program (sometimes referred to as a “day program”), a partial hospitalization program, a residential treatment center or an acute inpatient unit (listed from lowest to highest level of care). In an acute inpatient unit, the client is typically unstable medically (or emotionally) and requires 24/7 medical staff onsite to ensure safety.
But there is no “treatment as usual” during a pandemic. You must account for the following things:
1. Highly stressful world with new stressors (uncertainty, lack of control, fear)
Eating disorders typically develop, at least partially, in response to the stress in the environment around the client. Usually that list goes something like this: school, work, family, friends, finances, activities, the future. We all deal with those things and that is plenty. But this year has also brought with it the fear of an illness that we didn’t understand, couldn’t predict and didn’t know how to fight. The whole world found itself inundated with intense levels of anxiety and depression and helplessness. We all found ourselves relying on coping skills to one extent or another. The problem here is that the coping skill is the eating disorder.
2. Food shortages and shopping panic
If you remember back to the beginning of the pandemic, you will remember days of pandemonium. How many stores did you have to go to before you found hand sanitizer and toilet paper? How many people filled pantries and freezers with frozen and canned foods? We didn’t know how long this was going to last nor how desperate we were all going to get. If you work with these clients, you know how scary this was – suddenly news of food shortages and panic buying is all over the news and suddenly you are scared that you aren’t going to be able to find the one type of food that feels “safe” or get the “healthy” option. Or perhaps frozen/canned are terrifying and only fresh items are tolerable; but the grocery store doesn’t have any (and they can’t tell you when they will get any more). Not to mention that, for even the average person, a trip to the store (especially in those early days of the pandemic) was stressful; for those with eating disorders an already difficult task just became ten times more intimidating. And for clients who binge and purge, having a house loaded down with food can be like walking in a minefield.
3. Technology saturation
It is too easy to blame the media for eating disorders. They don’t cause them – it’s that simple. But the media does contribute. Technology contributes. Social media, constant connection, instant gratification, screen-time…it all contributes. Prior to the pandemic, tweens age 8-12 spent an average of six hours a day using entertainment media and the number increased to 9 hours for teens age 13-18 (Common Sense Media Inc., 2015). This number has sky-rocketed. With school closed and the majority of business running “work from home,” the computer screen (phone screen, ipad screen, etc.) became a constant companion. School is done from a computer. Work is done from a computer. You interact with your friends and family from a computer. The notifications that pop up are never-ending and, in whatever free time you have, the ability to scroll is literally right at your fingertips. I can guarantee that those teenagers are not sitting in zoom class or doing their assignments without their phones nearby; they are clicking and swiping as fast as they can – keeping Snapchat streaks going, posting pictures to Instagram, re-tweeting, watching (and creating) TikToks – all while appearing to pay attention. It is technology overload.
4. “THE COVID-19”
It wasn’t long into the global shut-down that the term “The COVID 19” was coined. Similar to the “Freshman 15,” the “COVID 19” refers to the amount of weight that people put on while spending most of their time in quarantine. For someone with an eating disorder, this notion is terrifying. Suddenly everyone is talking about working out from home and trying to shed the weight that came on so quickly. Now, just as during the post-New Year’s weight loss craze, my clients with eating disorders are triggered everywhere they turn. They believe their worst fears have come true and they have gained weight overnight. The ones with exercise addictions are constantly reminded of the very thing that I am telling them they cannot do.
5. No school or work or extracurricular activities
There is more at play than just a lost paycheck or a lower grade for individuals with eating disorders when they are out of their normal routines. The people of everyday life are also eyes and ears. Teachers, coaches, co-workers. For many clients, these are the first people who notice something going wrong. It often isn’t the family who sees it first because they are too close to the problem. Teachers and coaches serve invaluable roles in the treatment of teens and adolescents because they spend so much time with their students and they are often in a position to reach out to family members. It is hard to do this when all you get to see is a kid’s face on a computer screen (if they even have their video turned on). Likewise, it is often at the urging of co-workers and friends that adults enter into treatment and realize what a toll the eating disorder is taking on their lives. If it weren’t for the people around them, many eating disorders would go (and are going) undetected and untreated for far too long.
6. Social Isolation
There is a reason why social interaction is an integral part of many of the treatments for eating disorders. When someone is in the depths of an eating disorder, their world shrinks. We tell our clients this. We remind them about what it once felt like to have friends and a full life. Through treatment, the goal is to help them remember and feel comfortable with social interaction again. But you can’t do this is the middle of a pandemic and sometimes that means that “normal life,” without the eating disorder, seems much less appealing. We have also all lost a support system that we could rely on – one that can sometimes help when the people you live with aren’t quite enough. As good as Zoom and FaceTime are, a video call will never be the same as getting together with a friend.
7. Lack of distracting activities
Another thing that figures prominently into eating disorder treatment is the development of ways to tolerate distressing emotions. Aside from talking about your feelings (which we have already done away with due to social isolation), distraction is one of the most useful tools in eating disorder recovery. Getting involved in something engaging, whether it be volunteering for the animal shelter or going to a movie or reading a book, is a necessary skill when feelings get overwhelming. We brainstorm with our clients about activities that they can do in difficult moments but our brainstorming lists have gotten materially shorter. I can’t even count the number of times that I have thought, “well…you could try this…” and then realized that they cannot, in fact, do “this” (whatever that might be) because of the quarantines and closures and safety protocols. And when we finally do manage to find something that is both accessible and distracting, chances are it will not work forever and, at some point, we are going to have go right back to the drawing board.
8. Potentially constant contact with triggers or eating disorder origins
We are not going to blame families for eating disorders in this article. Historically, too many professionals have said that an eating disorder results from an over-bearing mother and an absent father. Research no longer supports this. However, as said before, “environment pulls the trigger.” Not any one thing, per se, but a conglomeration of things – ONE of which CAN BE the home environment. This is not so bad when you get to go out and exist in the broader world and then return, bolstered by other social supports and other ideas and other interactions, but when the world shuts down those other things do as well. Suddenly, the world (already shrunken by the eating disorder) is even smaller. Families are triggers. Even the most well-meaning families push buttons that they didn’t even know were there. Anyone in close contact at all times is going to push buttons and trigger behaviors. And during a pandemic there is no escape.
9. All therapy sessions are conducted virtually
Therapy is great. It’s standard procedure in eating disorder treatment. But typically, it is done in an office, face to face, where therapist and client can look each other in the eye, but also look away. It is not normal to hold constant eye contact through a screen. There are a host of other verbal cues that are also important – like when the client is fidgeting or when their foot is tapping or when their hands are curled into fists. It is important for the client to see their therapist leaning in, mirroring their movements, showing attunement to their feelings, even when delivering hard news or pushing uncomfortable discussions further. Most of my patients signed up for in-person therapy and are receiving tele-health. Some have settled for tele-health because it was the only thing offered when they sought treatment. It works well for some, but not as well for others. In the old days, we could offer both; now we can’t. That changes things.
10. Medical monitoring is done from afar or done far less frequently
Eating disorders cause a host of medical issues. Again, listing them here would be beyond the scope of this blog. What is important is that people with eating disorders need to be monitored. They need blood levels checked and blood pressures taken, and bone density scans and urine analyses. Most need their weights recorded and watched. While work-from-home sounds good, and no-doubt reduced the spread of COVID, none of these things can be done by a doctor from home. And so, for even the most critically underweight clients, we, as the professionals, are left guessing at progress or regression because sometimes you just can’t trust your client’s self-report. To a certain extent we have to rely on the numbers – which for along time we didn’t have. Even now, as offices have re-opened and things are returning to “normal” many clinics see clients only on certain days or times or stagger their staff schedules. Now, while critical patients might finally be monitored more closely, those with “less severe” eating disorders are still being seen in-person less than they would have been before.
11. Higher levels of care are done virtually
Along with doctors’ offices closing and therapists’ offices closing, higher levels of care (intensive outpatient, partial hospitalization, residential) also had to close their doors. I had a client that was sent home from a residential treatment center when a staff member got COVID. Through no fault of the program, she was unable to complete treatment there. They told her she could return, but it would be months before they re-opened. Similar to outpatient therapy and doctor’s appointments, programs went virtual. While on some levels this has opened up treatment accessibility to people that wouldn’t have had it otherwise, it has also somewhat compromised the true nature of these more intensive programs. Higher levels of care are typically used when supervision and support is needed more than can be provided in outpatient. Meal supervision – it’s hard to watch a group of teenagers eat a meal when they are just boxes on a computer screen; staff members just miss too much and people with eating disorders can be sneaky. Group therapy – while the client might be sitting in front of their computer, appearing to listen, there is no way to know whether they are actually scrolling through Instagram or playing games on their phone instead. Family therapy – sometimes it is hard to address sensitive topics when you know that the whole family is going to still be in the house together after the session is over, without any separation or time to process what has been said. And exercise and bathroom monitoring – when the screen goes off, there is no one there to make sure that the client is not over-exercising or purging. It is not that treatment centers didn’t think of these things – because they did. And everyone has done the best that they can under unexpected and unpredictable circumstances. But for some clients with eating disorders it just hasn’t been treatment in a way that can truly contain their symptoms.
12. Extraordinarily long wait times for higher levels of care
And finally, now that programs with higher levels of care are opening their doors again, the wait times are staggering. The average wait to get into a residential program used to be 2-4 weeks. Two weeks ago, I got on the phone and started reaching out to every center I could think of. Not a single one could tell me a wait time shorter than 2-3 months. For a client with an eating disorder – this is an eternity. Again, it is no one’s fault; it just is what it is. But it keeps clients in limbo, not quite getting the treatment that they need, uncertain when a bed is even going to open up. For many, symptoms intensify and despite the outpatient team’s best efforts they end up entering treatment programs “sicker” than they would have otherwise (which also means that they are likely to have to stay longer, further extending the wait times). As eating disorders have increased and symptoms have worsened, there just isn’t enough treatment to go around.
So here we are. Exactly a year later. Last March the United States began shutting down. Today, my practice is almost solely eating disorders when it didn’t used to be. Professionals know these things to be true – our clients are coming in sicker, they are holding onto their symptoms longer, they are needing more acute levels of care and are not able to receive it. We are tired. They are tired. Families and friends are tired. The uncertainty continues to keep us guessing, making up new treatment approaches as we go along, trying to be creative in times that we were unprepared for.
I don’t have any easy answers. Every day I show up for my clients and do the best I can, just like all the other professionals that I know. And we try to walk through the unexpected together. I write this not because I’m the expert on pandemics but because my hope is that, with awareness, knowledge and understanding, maybe we can continue to make our way forward. Maybe patients will feel understood when we (and they) know what they are up against. Maybe parents will see that their loved one is not just “stubborn” and that eating disorders don’t necessarily progress the way they used to. Maybe treating professionals will gain solace from the knowledge that we’re all experiencing the changes.
Stay safe…
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