Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Sunday

Who goes with you to your MS appointments?



Do you prefer to go alone or take someone along with you to multiple sclerosis specialist appointments? How about to magnetic resonance imaging (MRI) scans or other testing dates?

Back-up can be a bonus.

Sure, plenty of savvy folks point to medical advocates as an essential part of the diagnosis and treatment journey. And they often are.

A close family member or a trusted friend can be a valuable ally and asset during these sessions, where medical information and surprises may come at a person at full tilt. It can be overwhelming, especially trying to manage all the details on one’s own.


Supportive sidekicks help us ask the right questions, recall the answers, and process the information we receive at complicated medical appointments.

But sometimes help is anything but helpful.

Occasionally, taking the wrong person along can greatly complicate the process and add considerable stress.

Personally, I go to my MS-related appointments alone. I’ve been to countless MRIs, neurological appointments, neuro-ophthalmology tests and consultations, and even Evoked Potentials Testing – flying solo every time. I take along a paper pad and jot down notes, if needed.

Why?

Early on, I made the mistake of allowing a certain someone to accompany me to the first tests and consults I ever had for this MS journey. We walked into the hospital clinic and encountered the neurology and neuro-ophthalmology world for the first time.

And this presumably well-meaning person basically took over every session, even though our purpose for being there had everything to do with my medical condition … and no one else’s. It was incredibly stressful, watching this person (presumably present to be my advocate) interrupting the expert doctors, monopolizing the conversations, and trying to pilot my medical diagnosis and treatment protocol.

Climbing into the car, I couldn’t help but ponder all of my still unanswered questions. I never got a chance to ask -- at a time when that would have been most helpful.

From that point on, I’ve gone to every appointment alone, often armed with a written list of questions and possible concerns. And the doctors address every one, as best as modern medicine can do.

The MS warrior has enough battles to face, without having to run interference between his or her medical team and a Mr. or Ms. Butt-insky.

Maybe the day will come when I will find it helpful to enlist on-site support for MS appointments. If and when that happens, I plan to choose very, very carefully.

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