My caregiver speaks the language of MS as a resident, not a tourist
This National Family Caregivers Month, I sing the praises of those who help me
Like a lot of people disabled by a chronic disease, I don’t do well with unsolicited advice. The kind that suggests there is something I can do about my disease, that I’m not doing enough, not looking hard enough for a solution, that they would do better.
I’d prefer they just keep all that to themselves. For the most part.
My wife is the primary exception. She doesn’t have multiple sclerosis (MS), so she might not understand every aspect about what I’m going through, but after 16 years of marriage — 11 since my diagnosis — she understands enough. I can’t say I’m always grateful for her advice at the time she is giving it, but she is one of a few people I allow to criticize or advise me.
The Catholic bishop, Robert Barron once said, in part, “Criticize somebody precisely in the measure that you are willing to help him or her deal with the problem you’re raising.”
My wife is my caregiver and has the right to criticize me, or to tell me to try harder, because, unlike a stranger or casual acquaintance, she is actually there to help me try. She also knows better than anyone but me when I’m spent or what motivation to use if I’m not.
Learning the language of MS
Living with MS is sometimes like speaking a foreign language. I’m not exactly a native speaker, even though the genetic predisposition for MS might have been there, I wasn’t born with MS, as far as I know. Still, I’m the one with it, so I learned the language of this disease first and am more fluent.
My wife picked it up from me and had to rely on me to teach her. As this is a special language that can only be learned by immersion, rather than from a book or in a classroom, she had to be willing to learn it and I had to be willing to share it. I wasn’t always very good at that.
It’s tough to help someone if you don’t speak the same language. It’s even harder if one person in the relationship isn’t committed to learning it or the other isn’t willing to teach it.
When you don’t know a language, the impulse is to say it louder and slower, like a tourist. My wife isn’t a MS tourist, but healthcare providers are MS tourists. I don’t mean that disparagingly, though. They know the language better than most, but mostly speak it in phrases as if from a guidebook. The very best ones know this, and also know to advise and criticize only as far as their ability to help goes.
Enough with the awkward metaphors for now. November is National Family Caregivers Month and that’s my focus for today. I am well cared for because my wife, my kids, and select family and friends care for me. The measure that they are willing to help me through my life with MS is beyond comprehension.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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