Adapting to the role of an ill person is not easy. Society makes it very clear – if you are sick, you must want to get better and you must co-operate with the medical establishment.
In return, society will ‘allow’ you to shed normal responsibilities of work and household tasks for a limited time, until you are better. You are recognised as being in need of care and unable to get better by yourself.
This theory was first developed by Talcott Parsons in 1951, and despite its shortcomings, still holds firm in most peoples minds. But what happens if you have MS, your illness fluctuates and often you are well enough to participate fully in society? Where do you stand then?
MS can mark you out as a fraud. Some things said to me over the last two years:
- ‘But you look so well.’
- ‘When are you giving up work?’
- ‘Wow, you’re drinking alcohol.’
- ‘I thought you were ill.’
- ‘Why are you so tired, you were fine yesterday?’
Living as a fairly young person, with a fairly invisible illness renders you an uncomfortable anomaly. I have no standard ‘markers’ of a sick person, no visual clues. People just have to take my word for it, and this is where the tension arises.
I am in a no-man’s land between being well and being ill. I still want the ‘privileges’ that being well and a productive member of society brings – a job, a social life, status, etc. Yet I also need the exemption when I am ill, the extra support and help and many people, and society, would much prefer it if I chose one scenario and stuck to it. I can either be fully productive and keep quiet, or give in and take up the sick role full time.
Other people with MS can be just as judgmental. I once went to an MS support group and felt very out of place and unwelcome. Finally, the organiser took me to one side and gently explained that I made the others uncomfortable. I was talking about work and going out for a meal that evening. He said that this group meeting was often the only outing they had in two weeks. I wasn’t ‘sick’ enough to join their group. I never went back.
What’s the solution? I have no idea…..