“MS is many diseases in one. Not only does it floor you when you are diagnosed with the disease, but in those with relapse-onset disease it gets you again when you enter the secondary progressive phase of the disease; the point you realise that you have a progressive disabling disease. And again when you need a wheelchair; I did not appreciate the psychological impact it has on you when you have to migrate from using walking aids into a wheelchair.”
“At Barts-MS we run regular MS Preceptorships to teach various groups about MS. Our course is based on using case studies to illustrate specific issues in relation to MS. During last week’s preceptorship one of our MSers volunteers, who is struggling to stay mobile using a walker and FES (functional electrical nerve stimulation), reminded me how stigmatising using a wheelchair can be as a person with a progressive disease such as MS. Please note using a wheelchair as an MSer is very different to using a wheelchair after spinal cord injury. The paralympics have elevated spinal cord injured wheelchairers to the status of being celebrities. In MS the deficit is not fixed and gets worse over time; a very different scenario and prognosis to those with fixed deficits.”
“I was making the point that using a wheelchair would improve his mobility. Instead of consuming large quantities of precious energy walking and exhausting himself, he could conserve energy for other tasks by simply using a wheelchair. It would also mean he gets from point A to B quicker and he would be able to get out more and do more. Despite the logic of my arguments this particular MSer remains determined to avoid using a wheelchair. He has tried it in the past and hated the experience. For example, when he used a wheelchair in the past he lost eye contact with people they tended to look down on him. He also noted that they tended not to talk to him, but rather directed questions and comments to his partner despite them be related to him. He was treated as an inferior being. He found the whole experience dehumanising. Why should being in a wheelchair change the way people treat you?”
“May be we should redesign the wheelchair to allow people to maintain eye contact? These sorts of wheelchairs exist already. May be the emerging field of exoskeletons will keep MSers needing wheelchairs walking? Exoskeletons are very sexy at the moment and are being developed to enhance human performance; in particular for the military. Exoskeletons will not doubt be very expensive and out of reach for the majority of MSers. What we need is a solution now! We need to allow MSers to use wheelchairs and not be stigmatised. We need to refocus our attention on the wheelchair and develop ways to communicate its benefits and to get society to accept it. I would like to start a discussion around the wheelchair and explore ways of slaying ‘wheelchair stigma’!”
“If you have MS and are using a wheelchair we we would like to hear your story. In addition, we need ideas! What can we do to destigmatise the wheelchair?”
CoI: I frequently refer MSers to wheelchair clinics for assessments; sadly I rarely address the psychological impact this has on the individual being referred.