Dominating symptoms
Participants reported three major symptoms affecting their daily life: Cephalic and cervical pain, sensory hypersensitivity, and cognitive dysfunction. These three were repeatedly portrayed within a hierarchal framework: Cephalic and cervical pain was communicated as predominant, and words like intolerable and indescribable were used to describe everyday life in the periods of constant pain. Periodically, the pain experience was constant both day and night, and consequently sleeplessness was common. Several participants revealed that they used painkillers and anti-inflammatory medication to reduce the pain, but also to be able to sleep. One participant described the omnipresence of the cephalic and cervical pain in the following way:
2/3. The first thing is the headache. It's the main thing the whole way. You'll always feel that pressure. Can't relax - you're never able to lower your shoulders. There's always that little murmuring in the head.
Another participant elaborates, and adds the aspect of the varying intensities of the pain:
1/7. [F]or me the worst and the most destructive part is the pain ... that constant headache. It kind of manifests itself in the neck and spreads up throughout the head - and it seems to have different intensities all depending on how close to the eyes it gets.
In addition to the cephalic and cervical pain, and the resulting limited motor functions in the neck and shoulder area, the participants also stressed that sensory dysfunctions affected their lives in a major way. Hypersensitivity to light and sound was a large everyday challenge. Music, noise from children, or heavy machinery operating nearby were experienced as intolerable;
2/2. I had [teenagers] who played music, and they weren't allowed to exist because they had their mum to consider. It's been unendurable not to handle sound, not to handle light while dealing with all the other stuff...
The participants also claimed to have reduced eyesight and hearing following their WAD. They experienced tunnel vision and believed firmly that their judgment of distance had weakened. The hearing problems were not only experienced by participants, people close to them also made remarks:
2/1. [M]y husband says,"[G]et your hearing checked out"- but I've had it done and it's 100%. Clearly, it's got to do with me concentrating so much, and spending so much energy concentrating that I actually close out other things.
This quote not only underlines how the experience of reduced hearing is confirmed by others; it also reveals the participant's own causal interpretation. She considers her reduced hearing a consequence of spending so much energy concentrating on some things that she closes out everything else. Her interpretation is confirmed by the other participants as the essence of the cognitive dysfunction-related complaints was described as reduced ability to concentrate and reduced memory. One participant describes the experience and the consequences of living with reduced ability to concentrate:
1/7. Reduced ability to concentrate - no doubt! You just feel so isolated. You can't participate in festivities. (...). You're not able to sit in a crowd, attend meetings ... and differentiate who's actually talking. Well, it can be done, [but] if they start to talk simultaneously - like people do in social gatherings - then it's completely impossible! You just have to get out of there, and you'll get sick, very sick with dizziness and a nasty wooziness in the head - it's difficult to explain.
The cognitive dysfunction portrayed here is perceived both as a pain trigger in itself and as a barrier to participate in social life. Further discussions among the participants on this topic revealed that cognitive dysfunctions were also considered a major barrier to employment. Reduced memory, as well as reduced capacity to read, write, or work in front of a computer made it difficult to keep professional skills updated.
1/3. I've been holding on to my job for dear life; on sick-leave and working, on sick-leave and working (...) eventually I had to give it up. I realize that I'll never return to work (...). Since I'm not able to read or learn anything new now - I just don't know what to do...
Based on the intensity of the symptoms, participants divided everyday life into good periods and bad periods. In good periods, the symptoms were perceived as manageable, but in bad periods the symptoms intensified and took control over the individual. The pain in bad periods could lead to frustration, anger, and depression. A participant explains:
2/5. I'm on anti-depressives these days because I got sick again - from all this pain. I'm pretty low psychologically speaking. I sort of hit rock bottom right before Christmas (...). And I'm struggling to get back up again.
Behavioral strategies
Participants in both groups felt that as whiplash patients they were ignored by the medical expertise. Left to themselves they started to develop coping strategies to cope with their symptoms. One participant described this process:
2/6. So when you discover that there are no miracle cures for the neck ... well, then you just have to deal with it and develop your own strategies. (...). Because you won't get any information - you'll have to figure it all out for yourself.
Finding suitable strategies were described as a process of testing the available medical and alternative treatments, trying out different training schemes, and self-experimenting. Subsequently, they were able to develop dynamic coping strategies, i.e. coping strategies constantly adjusting to the fluctuating intensity of their symptoms and the shifts between good and bad periods. The process of discovering effective coping strategies entailed significant life style changes:
1/8. You need to (...) learn how to adjust your life in relation to stress, level of ambition, barriers, and all that. Luckily you get better at it, but you do have to settle for a different level than you originally planned.
Another participant pinpointed some of the specific consequences these life style changes had on his life:
1/7. Everyday life is very controlled. It's training and resting, and avoiding everything that might trigger a worsening. Well, I have given up all hobbies - boating and hunting ... forget it. (...). So it's necessary to be very controlled, but we should get used to it because it's worth it. The weeks that you manage to be slavishly and work only when [the pain] allows you to, that gives a great sense of satisfaction to manage that, right? (...) Even though I miss it all.
Maintaining good periods, and avoiding or shorten the bad periods, were portrayed as the main goals for their coping strategies. The participants used the term "balance" to describe the intention behind their self-initiated strategies; you have to maintain a balance all the time - and not exaggerate anything (2/5). They claimed that maintaining a balanced life was imperative to be able to function with their symptoms.
The most important factor in maintaining a balanced life was the possibility to rest in calm surroundings. This meant that they would decline invitations to social gatherings, or that they would leave the house if it was too noisy. Rest was used to prepare for events:
2/3. If I'm planning anything in the near future then it's three days indoors first ... to charge up my batteries. No social life, no light, or sounds out of the ordinary, no computer, no TV, or anything like that for three days - then I can participate.
Rest was also used to unwind and regain control over the pain that occurred after being exposed to social activities, reading, music, driving, or flying. If you're not able to recuperate, then you'll get it back twice as hard! You're just making your own hell! (1/6)
Another strategy was exercise. For the majority of participants exercise was a dominating part of everyday life:
2/1. I use a large proportion of the day - before noon - to exercise. When I've exercised I need to relax - if not I'll be in a bad state in the afternoon.
The ones who found training methods with good effect used these as "self-medication", since they were able to reduce their original use of painkillers when the exercise had effect. I'll rather take a hike in the woods. That's my medication (1/2). The exercise sessions described by the participants were training therapy using elastics, walking, hiking, swimming, or other forms of self-training. Participants maintained that only a couple of days without training would have a negative impact on pain intensity. Regularity of exercise intensity and tempo was consequently important for the desired effect. A few participants reported that even simple training exercises would trigger pain. I have tried lots of training schemes (...). But what I experience is that it triggers headache. (4/2). Consequently physical activity was avoided and these participants preferred to use rest to maintain a balance.
Rest and exercise were described as both time and mind consuming strategies, and, throughout the focus group sessions, it was understood that they required various levels of social withdrawal from the individual pain sufferer. However, participants stated that social withdrawal was an important coping strategy in itself. Keeping to oneself was an efficient way to avoid potential pain triggers and maintain good periods:
1/8. I discovered that I became more and more antisocial. When I came home from work or ... I just preferred to be by myself, (...) that was my way of coping. It was a scary discovery.