Supercluster | Cluster | Subcluster | Representative statement | Cluster mean | Subcluster mean |
---|---|---|---|---|---|
Living with the condition | Worries about my condition/unanswered questions | I don’t have any information about what I can do for myself | What can I do? If I feel pain, should I stop doing it? | 4.1 | |
Worries about my condition/unanswered questions | Is it getting worse? (I feel out of my depth) | How does the future look for me? | 3.8 | ||
Worries about my condition/unanswered questions | Unemployed – so what? | For how long can I continue to work? | 3.2 | ||
What you’re exposed to, feelings about it | Pain | I wake up during the night in severe pain | 4.1 | ||
What you’re exposed to, feelings about it | Mentally affected | Mentally affected – the condition gets me down | 4.0 | ||
What you’re exposed to, feelings about it | My body is curling up | Consequences of not being able to use my body – the underlying level is getting worse and worse | 3.8 | ||
What you’re exposed to, feelings about it | Tiredness | I have to sleep for a few hours when I get home from work | 3.5 | ||
What you’re exposed to, the feelings about it | Restrictions in daily life (frustrating) | Always dropping things – very frustrating | 2.9 | ||
Treatment | Medication (effects and side effects) | Worries about the medication | If the medication doesn’t work, are things just going to be the same for the rest of my life? | 4.0 | |
Medication (effects and side effects) | Side effects | I’m under a mental strain with the medication | 4.0 | ||
Medication (effects and side effects) | Can I go without the medication? | If my condition has got worse while I’ve been taking the medication – can I possibly go without it? | 3.6 | ||
Medication (effects and side effects) | Hopes for the treatment | The medication affects different people differently, and of course a lot of them have had only positive experiences | 3.4 | ||
Medication (effects and side effects) | Frustrated about the lack of effect | I’ve tried a lot of the biological drugs, but either they were ineffective or I could not tolerate them | 3.3 | ||
Own approach (I’m doing something myself) | I’m bearing up/finding a solution | You find that anything is possible | 3.9 | ||
Own approach (I’m doing something myself) | What I can do for myself? | I find out a lot about my condition before I see the doctor | 3.4 | ||
Surroundings | Being treated as a patient (not a person, just part of the system) | I get the impression that the doctor has to ‘tick the boxes’ | You can easily end up feeling like a laboratory animal | 3.8 | |
Being treated as a patient (not a person, just part of the system) | It’s hard to have a say in the treatment | The doctor says that if I do not do as he tells me, he won’t refer me | 3.8 | ||
The encounter with the system (the municipality) | There is no understanding for/faith in me | The municipality does not believe what I say | 4.5 | ||
The encounter with the system (the municipality) | It’s very difficult to get help | Applying for a flexible-hours job was a struggle | 3.0 | ||
The encounter with the system (the municipality) | An exhausting struggle with the system | Contact with the public system is immensely exhausting | 2.5 | ||
It’s difficult having an invisible handicap | It’s hard for others to understand my condition | I find it difficult to admit that I can’t do the same things as before | 3.6 | ||
It’s difficult having an invisible handicap | I notice that my illness makes people anxious about contact | People are alarmed when you tell them you’re having chemotherapy (MTX) | 3.3 | ||
It’s difficult having an invisible handicap | It’s hard to explain the pain I’m in | I don’t feel that I’m taken seriously | 3.2 |