Unhelpful internal factors
The loss of their prior lifestyle and functional ability provoked common reactive psychological worries. In addition, they still found it challenging to find their activity limit, thus there was still a risk for overdoing, even after four years:
I do too much, at work too, because of [an economic] need. I see how I go back to the old pattern again when I start feeling better, that’s probably very risky (P13).
Lack of energy and stamina, easy fatigability and high symptom burden made the participants feel older than they actually were. This coupled with a strained economic situation, was experienced as scary and emotionally draining:
I feel old prematurely... live like a loner, like an old lady. I feel like an octogenarian in a forty years old body. Everything hurts, stiff, weak… before I was very physically fit and climbed on walls and ran upstairs and carried things. That’s over. I’m so scared when I go from here… everything hurts… you are thinking, living like you are supposed to do when you are in your eighties. I feel like I’m drained. I feel like my body has gone through a huge process of... as if my body has been inside of a dishwasher for several years, or inside a dryer, [and] that my body has been thrown around, and nerves have been on edge (P10).
Many still suffered from IBS complaints. Some symptoms had abated, whilst others experienced the same symptom burden, or had become worse again:
The recent weeks have been the best in a long time (P4); I’ve become weaker and weaker than I’ve been the last years, much more fatigued… like a zombie at home (P29); Stomach pain, diarrhoea and sweating all day… the body trembles, headache and the stomach growls, flatulence (P20).
The experiences of being severely incapacitated, having a poor economy and lacking financial support from the social security system or insurance company made participants force themselves to work to provide for themselves and their offspring. This made their everyday very emotionally challenging, drained them of energy and seemed to be counterproductive in regard to improvement of health:
I have no social life… a limited quality of life, to say the least. What should I do? What is right? But I have not ... I can stop working, I might lie down, but I have no one that puts bread on the table for me and my daughter the next day [if I don’t have income]. What do I do then? Will the Child Protection Services take my daughter away? (P10).
The participants trying to maintain full-time work needed longer and longer sick leaves. Those who tried hardest to keep going exhausted the body more and more and eventually dropped completely out of work or studies. Others were able to work or study part time, less than 50%.
I’m on disability benefits (P20); Now it’s fifty-fifty for me when I’m working 50%… 50% welfare benefits (P26); I’m much better… at school six hours every day, max (P16).
How much the participants had improved their functional level during the natural course of four years varied a great deal as a few had hardly or only slightly improved whilst some had improved markedly, and a few had experienced a new decline. However, none of the participants had regained pre-illness health or functional level.
Despite a high symptom burden, the participants were not pre-occupied with attributing symptoms to a physical cause as they already were aware that their symptoms emerged in the wake of an objectively confirmed infectious disease.