Mutual recognition of MS

M
Skår AB, Folkestad H, Smedal T, Grytten N. “I refer to them as my colleagues”: the experience of mutual recognition of self, identity and empowerment in multiple sclerosis. Disabil Rehabil. 2013 Jul. [Epub ahead of print]Purpose: To explore how persons with multiple sclerosis (MS) experience participating in inpatient rehabilitation, and how it might provide psychosocial benefits. 

Method: Ten participants with MS who had completed inpatient rehabilitation in Norway and on Tenerife participated in two focus groups. A semi-structured interview protocol was used. Data were analyzed using qualitative content analysis informed by a phenomenological perspective. 
Results: During inpatient rehabilitation participants shared experiences with symptoms of the disease, of social stigma and coping strategies. They communicated experiences of living with MS and they created a sense of community, they became “colleagues”. This experience gave rise to mutual recognition of ability, impairment, self and identity, and thus facilitated personal empowerment to counteract social stigma through adequate coping strategies. 
Conclusion: Participating in inpatient rehabilitation gave people with MS the possibility to exchange information and communicate strategies for coping with the disease-related conditions and societal demands. They established social relations recognizing each other’s resources. Participants felt equipped to make decisions and to mobilize individual and collective resources. Recognition of the individual with both ability and impairment can be a key to empowerment. Implications for Rehabilitation In multiple sclerosis (MS), the clinical symptoms and the unpredictability of the disease may have consequences for how patients relate to self and to others, and hence how they perform socially. Stigmatization is commonly experienced among people with MS. The recognition experienced from peers create a sense of community. We recommend health care professionals to acknowledge the importance of peer support for self, identity and empowerment in MS.

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3 comments

  • Peer support works for me. My friends were diagnosed after we already knew each other. Therefore, we were already like-minded people.
    It certainly helps to discuss things you wouldn't say to family.

  • So meeting and talking with other MSers is a good idea. I'm sorry but this strikes me as stunningly obvious. Communication is so important in so many ways. Talking face to face with a counselor, doctor, friends, other MSers etc etc means that you can say things that you might not say to your family for a whole host of reasons. My strategy is constantly changing to deal with this progressive disease so input from other people who have been there before me must be a good idea.
    The only thing that worries me is how many kroners were spent proving the obvious

  • I've found, in the ms ghetto there are just as many annoying, obnoxious and pompous people as there are amongst the hoi polloi.

    I reckon, it's a bit like being overseas and hearing someone with the same accent as you – doesn't automatically mean you are of 'like' minds or want to hang out with them. Not saying not, but not saying automatically a relationship either.

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