As a science writer, I often write about MS, Huntington's disease, chronic pain, and other afflictions of the nervous system. I can't help but wonder how people with neurodegenerative diseases would like people to refer to them in the context of their condition. I've always thought that "sufferer" was about the last way I'd want people talking about me, even if I were suffering, and even if people were discussing the source of that suffering with the best intentions. This study illuminates MSers' view on the topic, and should be considered by clinicians, scientists and writers for all audiences.
Seems like "MSer" is identifying the person with their disease, whereas "person with MS" seems to me to acknowledge that the person is a unique individual who just happens to have MS, like "person with blue eyes." I was previously taught not to say or write "MS patient" or "AD patient," for example, because it seems to define the person by their disease. When referrIng to research studies we could say "participants with MS."
This question came on the same day as I attended the first session of a class "The Soul: In Life and Afterlife." One of the sources we talked about was a 12th century doctor by the name of Maimonides. Now, Maimonides is more rightly known as a philosopher than as a doctor, but in this context, he clearly was on to something.
He taught that the body should be considered the envelope, if you will, for our true being.
So in this context, I'm certainly not an "MS sufferer," though I suffer both the symptoms and the consequences.
I am not an "MS patient," because our disease cannot modify our personhood.
An "MSer" carries the same consequence, by defining me by a disease. The desire to create community -- which may be the genesis of this term -- could instead label us. It's also dangerous, given the wide range in how MS expresses itself.
So yes, I'm a person with MS. As Laurie noted, in research it's best to say "participants with MS," as we'd say "with cancer," etc.
Thank you for the opportunity to comment.
this is a very interesting question. as a person affected by this medical condition words such as "disease" are not tyo be mention, sound very contagius. i think PwMS intended as Person with MS is the most appropriate. Thanks for the opportunity to give a comment.
Comments
As a science writer, I often write about MS, Huntington's disease, chronic pain, and other afflictions of the nervous system. I can't help but wonder how people with neurodegenerative diseases would like people to refer to them in the context of their condition. I've always thought that "sufferer" was about the last way I'd want people talking about me, even if I were suffering, and even if people were discussing the source of that suffering with the best intentions. This study illuminates MSers' view on the topic, and should be considered by clinicians, scientists and writers for all audiences.
Seems like "MSer" is identifying the person with their disease, whereas "person with MS" seems to me to acknowledge that the person is a unique individual who just happens to have MS, like "person with blue eyes." I was previously taught not to say or write "MS patient" or "AD patient," for example, because it seems to define the person by their disease. When referrIng to research studies we could say "participants with MS."
This question came on the same day as I attended the first session of a class "The Soul: In Life and Afterlife." One of the sources we talked about was a 12th century doctor by the name of Maimonides. Now, Maimonides is more rightly known as a philosopher than as a doctor, but in this context, he clearly was on to something.
He taught that the body should be considered the envelope, if you will, for our true being.
So in this context, I'm certainly not an "MS sufferer," though I suffer both the symptoms and the consequences.
I am not an "MS patient," because our disease cannot modify our personhood.
An "MSer" carries the same consequence, by defining me by a disease. The desire to create community -- which may be the genesis of this term -- could instead label us. It's also dangerous, given the wide range in how MS expresses itself.
So yes, I'm a person with MS. As Laurie noted, in research it's best to say "participants with MS," as we'd say "with cancer," etc.
Thank you for the opportunity to comment.
this is a very interesting question. as a person affected by this medical condition words such as "disease" are not tyo be mention, sound very contagius. i think PwMS intended as Person with MS is the most appropriate. Thanks for the opportunity to give a comment.