Part A: Overall Impact of the Pandemic and Factors Involved
Quantitative Analysis
When asked about the overall impact of the pandemic on their ED, the majority of our participants (83.1%) reported that their symptoms had worsened, while 6.8% reported that their symptoms got better and 7.7% reported no change in symptoms (the remaining 2.4% failed to respond to this item). Reported changes in symptomatology did not differ between diagnostic groups (χ2 (18) = 18.8, p = .409), although see supplementary materials (3) for a breakdown per diagnoses.
Looking specifically at the participants who reported an exacerbation of ED symptomatology (n = 172), we examined which factors participants thought had had the greatest impact on their ED. There was striking heterogeneity between participants. Overall, as can be seen in Fig. 1 (and supplementary materials 4), the three most important factors were changes to routine and physical activity, and difficulties around their emotions. Non-parametric correlations between these factors were positive but weak, indicating their independence from one another.
Interestingly, the importance of some factors differed between diagnoses. This was the case for exposure to triggering messages (F(3, 171) = 3.4, p = .020) which Bonferroni-corrected posthoc tests revealed was more important for people with AN and people with OSFED than for people with BED (mean difference = 19.7, p = .005; mean difference = 18.5, p = .039, respectively). Differences in the importance of changes to food availability were marginal (F(3, 171) = 2.6, p = .056) but, in corrected posthoc comparisons, this factor was more important for people with BED than for people with AN (mean difference = 17.1; p = .013) or for people with BN (mean difference = 18.4, p = .019). Non-parametric correlations between the ‘difficulties with emotions’ factor and the other factors were also illuminative in so far as suggesting which factors were most associated with strong negative emotions. For AN, corroborating the above, exposure to triggering messages was the factor most strongly correlated with emotions for participants with AN (r = .506, p < .001). The factors most strongly related to negative emotions were physical health concerns in BN (r = .637, p < .001); change in social support in BED (r = .446, p = .004); and disruption to routine in OSFED (r = .562, p = .004).
Qualitative Analysis relating to Overall Impact of the Pandemic
In free-text responses, we interpreted four main themes around experiences and impact of the pandemic. These are indicated in Fig. 2 (part A, themes 1–4) and described as follows:
Theme 1: Difficult Emotions. Participants reported experiencing a greater level of distressing emotions during the pandemic, which had a negative impact on their ED. This mirrors our quantitative finding that difficulties with emotions were one of the main factors impacting on the deterioration of ED symptoms.
The pandemic situation has worsened how hopeless and depressed I feel and in turn i think my eating disorder symptoms has become a little [w]orse when my mood is low or things dont seem to be going right I tend to always turn to my eating disorder to cope. [F119, AN]
Many participants described fear and/or uncertainty during the pandemic exacerbating their ED behaviours. Fear for the health of loved ones, fear of getting the virus, the trauma and distress of having had Covid-19 themselves, or having experienced illness or death of people they knew took an emotional toll. For participants who had been furloughed, or lost their job roles or university routines, the lack of structure and purpose, lack of control and loss of income resulted in distress. Many participants reported feeling a lack of motivation, increased anxiety, and a low mood due to having their work or education taken away from them.
Lost all my voluntary jobs. Felt like the floor had opened up and swallowed me, felt very very lost and confused. (F17, AN):
ED behaviours were a source of comfort for some, or allowed participants to distract themselves from the situation and their difficult feelings.
“restriction &b/p [binge-purge] are helpful to me as it distracts my mind from what i am worried about. i only have to focus on food related feelings which is usually easier than the difficult emotions i am avoiding” [F96, AN]
Some participants described how changes to ED behaviours during lockdown had resulted in changes to their weight during lockdown. Inevitably weight gain added to distress levels and often further exacerbated their ED.
Theme 2: Changes to Routine. Changes to routine during the pandemic resulted in more accessibility to food and exercise, as well as increased time and/or flexibility to engage in ED behaviours. These factors are outlined in the following three subthemes; ‘food availability’, ‘changes to exercise regime’ and ‘more time and flexibility’.
2.1 Food Availability. Initially during lockdown participants described anxiety about food shortages and lack of availability of their preferred or ‘safe’ foods. For some, food shortages resulted in reduced bingeing and purging, or encouraged restrictive eating behaviours.
At the very beginning due to the lack of food on the shelves at the supermarket, i did feel it was pointless trying to eat as the safe stuff was rarely available. (F17, AN)
Greater access to food due to stockpiling increased anxiety and perceived lack of control over eating.
A combination of constantly being at home, with easy access to the kitchen, and doing much larger weekly shops…has caused me a huge struggle with feelings of loss of control over food (F102, BN):
Food availability at home caused many participants to struggle with regulating their food intake. For participants with more restrictive eating behaviours (such as those with AN), reduced access to ‘safe’ food was more problematic, whereas participants who struggled with binge-purge or overeating (particularly participants with BN or BED), described stockpiling and the increased access to food as home particularly triggering.
2.2 Changes to Exercise Regime. In line with the quantitative findings, the limitations around leaving the house and the closure of gyms resulted in reduced opportunities to exercise for many, which was particularly difficult for participants. Lack of routine exercise during lockdown led to worries about reduced energy expenditure and anxiety about how this would affect their weight and shape. This was triggering, resulting in distress, and in some cases, increased compensatory strategies.
I gained weight, had increased anxiety and felt out of control. My weight had been stable for the past 3 years and I gaining weight in lockdown and not having access to the gym and seeing my body change was a trigger. (F16, EDNOS)
Changes to the ways in which participants could exercise safely, meant that exercising became a further cause of stress, rather than a way to cope. Some participants substantially increased their exercise regime at home due to more free time, or to deal with their lack of control in other areas of their lives.
2.3 More Time and Flexibility. As a result of the restrictions put in place during the pandemic, participants described significant reductions in their routine activities, social events or work schedule. More free time meant increased boredom and lack of distraction, which resulted in greater focus on negative thoughts, eating and weight.
Being inside because of covid also leaves me with so much time to spare and think about being hungry and then eating and then resenting myself and my body. There is too much time to think and nothing to distract me from obsessing about food (F115, BN)
Working from home allowed some participants more freedom and flexibility to engage in ED behaviours. For example, by exercising during lunch, or engaging in more restriction, bingeing or purging.
Because I am working from home, I am able to go for runs before work and on my lunch break which is great. (F127, AN)
Lack of value, purpose and routine resulted in lack of motivation for many. This hindered engagement in ED recovery.
In the initial stages of the pandemic it seemed pointless to try to manage my ED. The stress and anxiety regarding the future meant that I did not see the point in investing energy in my own physical or mental health… (F88, BED):
However a few participants felt that the free time was valuable for recovery, for instance they were able to focus more on healthy eating behaviours and implementing coping strategies.
Theme 3: Confinement. Participants who were living alone described feeling confined and isolated. The lack of social connection led participants to engage in more ED behaviours with no one there to monitor them or be accountable to.
It has meant that i have no one around to keep an eye on me so i can binge when i want to and then make myself sick to make myself feel better and i don't have to explain it to anyone because there is no one there to hear me … (M44, BN)
Although confined isolation was helpful in coping with the threat of the virus, participants who usually used activities and social interaction as ways to cope with their ED were left feeling trapped and less able to cope.
A usual coping mechanism before was to prevent periods of isolation when I thought Ed might surface. Haven't been able to use that strategy. [F13, AN binge purge subtype]
In contrast many participants moved home, or spent lockdown with family, partners or friends. Participants described stress at the lack of privacy, and feeling constantly monitored by others. This resulted in distress, low mood, conflict or withdrawal.
…I am finding it increasingly harder to constrict as my family are able to monitor what I am eating and my every move. I have screaming matches every day with my parents which isn't good for anyone, especially my sister so I am feeling more depressed than usual. (F89, AN):
Sometimes living with others also resulted in less control over what participants could eat, or pressure to eat certain foods, causing greater distress. These living arrangements resulted in more secrecy and attempts to hide behaviours.
It's meant I've had to go out of my way to hide food. For example a whole cooked chicken in my rucksack (M39, BED):
While the support from families and friends was valued by many, some participants described the stress of family life as a trigger for their ED. Participants who were caring for others, looking after their children or working from home, described the stress and exhaustion, with no time or space to focus on caring for themselves.
Crazy me and husband working at home for first time, with two teenagers who are not doing school work, out of control of situation in my own home as I have to sit at a desk at home 8 hrs a day (F118, BED)
However, some participants reported that confinement meant that they were facing fewer stress provoking situations due to lack of work and social pressure. This had reduced some of their daily stressors.
Theme 4: Unhelpful Social Messages- Making a Transformation. The pandemic was promoted online as a time to make a transformation, lose weight and get fit, with access to more online content promoting work outs and diets. These messages were unhelpful in promoting ED behaviours, or increasing pressure to conform to these ideals.
Everywhere I look there are people doing workouts or eating healthily or talking about weight gain/loss during lockdown. Theres a pressure to come out of this being amazing and self sufficient and healthy and people are promoting it. (F24, BN)
Some participants found that their increased free time during lockdown led to them making more social comparisons on social media, which triggered their ED and negative thoughts.
I have spent more time on my phone and using instagram, this is harmful as i compare myself to others and this makes me feel bad about myself. [F126, AN]
Messages about fear of gaining weight during lockdown were also triggering, exacerbating these fears in participants at a time when gyms and routine exercise were less accessible. In line with quantitative findings, triggering social media messages were mostly described by participants diagnosed with AN.
I have been triggered a few times from people posting things like Don't worry about gaining weight in quarantine/other body positive messages, because prior to seeing them I didn't even think that weight gain could be a potential issue of quarantine. (F15, AN)
However, a small number of participants described how these types of messages did not affect them, as their ED was more fuelled internally.
Part b: The Role Of Emotion Regulation
Quantitative Analysis
All assumptions for multiple regressions were met. Differences between diagnostic categories were slight, so for clarity we only present the regression analyses for the whole sample. The results of regression analyses split by diagnosis categories can be found in supplementary materials 5.
Model 1: DASS. We found that reduced access to emotion regulation strategies (B = 3.33, p < .001), non-acceptance of emotions (B = 1.57, p = .002), and reduced emotional clarity (B = 1.50, p = .001) were significant predictors of poor mental health as measured by the DASS (Adj. R2 = .472, F(3, 203) = 62.3, p < .001).
Model 2: Self-reported change in symptoms. We found that difficulties maintaining goals when upset (B = 0.09, p = .004) was the only significant predictor of self-reported changes in eating disorder symptoms (Adj. R2 = .036, F(1, 200) = 8.54, p = .004).
Model 3: EDEQ. We found that non-acceptance of emotions (B = 0.07, p = .007) and difficulties maintaining goals when upset (B = 0.09, p = .001) were significant predictors of eating psychopathology (Adj. R2 = .156, F(2, 204) = 20.0, p < .001).
Qualitative Experiences Relating to Coping with Emotions
We interpreted two themes relating to coping with emotions; Emotional Support, and Emotion Coping Skills (See Fig. 2, part B, themes 5 and 6). With reduced access to usual emotion regulation strategies, such as emotional support from loved ones, participants spoke about the increased use of other coping strategies.
Theme 5: Emotional Support from Others. Some participants described how supportive family members had been protective for them during the pandemic. Talking to family, partners, or friends was a key strategy for coping with their eating disorders for many participants.
I am also a lot more honest with my family and friends about the struggles I face so I have constant support from them when I need it. [F122, AN]
There was a reduced amount of contact with friends or family members during lockdown and many struggled with having less connection and less emotional support from loved ones.
Not speaking to my best friends every day / not [seeing] them at all has made things worse. [F99, BN]
The lockdown also meant a loss of support group activities. However, some participants also spoke about finding new avenues for support, with some support groups moving online and this making them easier to access. There was also an increased use of recovery-focused social media use and eating disorder support websites.
I feel this pandemic has put a lot of services online that are easily accessible for help. I discovered an online zoom support group for people affected with eating disorders and this has helped me every week. I feel I can talk openly and feel less alone. My normal service has not been active during this time. [F7, AN]
In contrast, a few participants described how they did not rely on support from others and tended to deal with their difficulties on their own. For some, there was a reluctance to talk about their own issues.
Feel guilty about talking about any difficulties I have during the pandemic as there are people who are in much worse circumstances, and my difficulties are little in comparison. [F26, AN]
These participants spoke of their difficulties as feeling insignificant in comparison to the pandemic and/or not wanting to worry others at a stressful time.
Theme 6: Emotion Coping Skills. Participants discussed different strategies used to cope with emotions, both helpful and unhelpful, as outlined in three subthemes; ‘avoidant or unhelpful coping strategies’, ‘creating boundaries to look after self’, and ‘adding in positive activities’.
6.1 Avoidant or Unhelpful Coping Strategies. Some participants described drinking alcohol and increasing their use of medication, such as sleeping pills and painkillers, as a short-term escape mechanism.
I’ve been drinking way more than I should as a means to escape the reality for a short period of time.” [M72, BED]
A few participants reported an increase in self-harm as a coping strategy; some felt as if this was their only outlet, as their other normal coping mechanisms had been restricted.
The pandemic has increased my self harm, as I’ve felt so restricted by the government in terms of what I can do to deal with my feelings (i.e. initially – only exercise once a day, not able to exercise with anyone else). Using healthy means to deal with difficult feelings (i.e. go for a walk, meet a friend for coffee) have been more limited and so it is really easy to go back to unhelpful ways of coping such as self harm. [F5, AN]
Participants who spoke about their increased drinking, self-medicating, and self-harm recognised these as unhelpful coping strategies.
6.2 Creating Boundaries to Look After Self. There were several coping strategies described which were about taking positive steps to look after participants’ emotional wellbeing. Getting enough sleep was one important factor for helping participants to feel able to cope with their difficulties. Some participants focused on planning appropriate meals to avoid comfort eating or takeaways. Others also put strategies into place to allow themselves to exercise for its positive effects but to use limits avoid over-exercising.
I've had more time to exercise self-care - e.g. yoga, meditation, as well as simple things such as getting enough sleep due to not having to go into university. [F82, AN and BN]
Participants also recognised that the news and social media contributed to increased anxiety and so it was important for their exposure to be limited.
I usually have a good handle on my emotions per se. I had a spike in anxiety in the beginning though. As I mentioned, this seemed to be fuelled by the media. I consequently took my usual all-or-nothing approach (which is often an issue with the eating) however it worked well with regard to abandoning the media and news. This I believe reduced my anxiety by a notable degree. [M61, BED]
Many participants also coped by limiting their time on social media, or deactivating their social media accounts completely.
So much bullshit pressure to get a lockdown body - for this reason I came off social media early on in lockdown. [F76, EDNOS]
Implementing boundaries demonstrates a helpful way to cope with distress as discussed in the earlier theme of ‘unhelpful messages – making a transformation’.
6.3 Adding in Positive Activities. Participants recognised that unstructured time could have a negative impact on their emotional wellbeing and their eating disorders. Again, this fits with our quantitative findings in which participants rated changes to routine as having one of the greatest impacts on the worsening of the ED symptoms. Participants found that building structure, developing new routines and planning mood boosting activities were beneficial for their mood and EDs.
Planning what to do the next day- gives me some routine and something to actually wake up for! [F31, AN]
There were a wide range of positive activities which helped people to cope. Participants spoke about enjoying reading and learning new skills. Having a form of creative outlet, such as oil painting, photography, was important for some participants to channel their stress and express themselves.
Trying to keep myself busy, I have taken up crafts as a mean to express myself and take my mind off things. [F116, AN]
Another popular coping strategy was using different forms of writing, including gratitude diaries and stories.
My best and favourite it probably noting things down, whenever I come across a problem that requires a lot of thought I open a note page and jot everything… for example, I come across a problem that gives me a lot of anxiety the best way for me to get rid of it would be to understand the situation at hand therefore I write out different notes that give me a better understanding, why its happening, whats next, best course of action for minor benefits and major benefits etc. [M59, AN]
Participants spoke about the benefits of going outside and enjoying time with their dogs as helpful coping strategies.
When I feel down and want to engage in unhelpful behaviours I have asked friends to borrow their dog for a few days to help me cope. Dogs are happy 99% of the time, require walking which means I have to get out of bed and face the world, I can hug them (even though I can’t hug humans outside my household which I miss) and they don’t care what size my body is or what it looks like. [F5, AN]
The range of positive activities discussed were beneficial for people’s wellbeing and participants also found that keeping busy was a helpful distraction.
Part c: Qualitative Experiences Relating To Online Treatment
Participants who had received some form of treatment, either by telephone or by online videoconferencing, spoke about their experiences. Themes interpreted in this part of the analysis are depicted in Fig. 2, part C, themes 7 and 8. The first theme captures aspects of remote sessions which impacted the accessibility of this support. Participants who did not receive any treatment during the pandemic also shared their experiences. The second theme identified an experience of loss, including those who had no support from healthcare during the pandemic and those whose experience fell short of services usual provision.
Theme 7: Accessibility - Barriers and Facilitators
There were two subthemes reflecting some of the benefits and disadvantages to remote sessions: ‘detached connection’ and ‘ease of access’.
7.1 Detached Connection. People spoke about some of the difficulties with their experience of receiving support online and this feeling more detached.
I find there is something detached about online treatment in that it doesn't feel like you're really connected to the other person because at the end of the call, it's just you in the same room as you live day to day. Also, for a while my therapist used a false background that left me feeling really uneasy as it made the session feel somehow less real/professional. [M1, AN]
For some, there was a feeling of online treatment being less safe because of not having a confidential space at home to express themselves freely. For a smaller number of participants, their anxiety about telephone or video calls meant they felt unable to engage in this support at all. Frustrations with the quality of the internet connection were an additional hindrance to participants being able to engage fully.
I dont feel that I can talk over video call whilst in the house with partner and children within hearing distance [F101, BED]
Many participants spoke about the connection with the therapist as feeling less personal and more detached in comparison to face-to-face contact. This detached connection became a barrier to some participants being able to engage fully. For a few participants, there was more opportunity to hide or not disclose important information.
Now video meetings have started.. but I'm far less open in these sessions and hide… what has been going on. [F13, AN-bp]
In contrast to this detached connection, there were many participants who commented on their experience of having a strong therapeutic relationship, which allowed them to feel safe, secure, able to connect, and to feel heard and believed.
Weekly connection. Feeling heard Feeling believed [F17, AN].
For participants with a positive therapeutic relationship, this seemed to protect them from the feeling a detached connection.
7.2 Ease of Access. The move to online treatment made treatment more accessible for some participants. Online treatment reduced lengthy travel times due to the large geographical regions covered by many specialist eating disorder services.
We have moved to online sessions but it is good not to have to travel an hour each way. [F62, BN]
The online aspect also reduced some of the anxiety-provoking barriers and allowed a few participants to feel more able to seek help.
Being able to have regular contact with medical professionals via telephone has made it much easier for me to seek help, as it feels much lower commitment, and gives me far less anxiety, than seeking out face-to-face treatment. [F102, BN]
Theme 8: Loss of Support
Participants described their experience of support during the pandemic as being of a lesser quality than their usual support. For many, the typical structure and expectations of active treatment were lost, or paused, and replaced with a less formal “check-in” chat.
It's been hard to move to online treatment and has meant that I've stopped following the therapy structure I was following so now am just working on keeping stable. [F41, BN/AN]
Other participants spoke about a loss of treatment support. Treatment was either delayed or stopped for many. Some services were closed and there was a sense of loss at not receiving support in a time of need.
Clinics have closed. No face to face appointments. No-one to talk to. [M23 BN]
Some participants described the loss of valued support from their GP as well as their specialist ED support.
Do not get to see my GP any more. He was my lifeline and my rock. [SM22, AN]
Another factor preventing many participants from accessing treatment was strong feelings of guilt about taking up NHS time and not wanting to bother NHS services during the pandemic. One participant described feeling “like a grotesque burden” [F39, AN]. Some participants expressed feeling undeserving of help.
I've definitely felt guilty using NHS services, i've also felt undeserving of counselling/therapy sessions. [M45, OSFED]
The hesitancy in seeking help also applied to participants who had experienced a relapse of their ED during the pandemic; participants spoke about waiting to ask for support until the end of lockdown.
I was doing well but Covid and lockdown made me think again about food. I am considering going back to the Dr's to request treatment now that we are seeing the end of lockdown, as I wish to go back to coping with my issues. [M66, BED]
In contrast, a few participants spoke about the loss of support being an opportunity for them to take more responsibility for helping themselves. For participants who spoke about having the knowledge and skills to enable themselves to get back on track, they were able to put their experience of previous therapy into practice allowing themselves to be their own therapist, despite not having access to the support of services during this time period.
It gave me a sense of direction on how to help myself as at the end of the day it's myself that needs to be able to cope with my own mental well being. [M38, AN]
The finding that a small number of participants were able to take positive steps towards looking after their mental wellbeing reflects our quantitative finding that a minority of participants reported symptom improvement or symptom maintenance.