Is it just me, or is that how everyone feels when they are diagnosed with multiple sclerosis? It’s bad enough that when you are slurring your speech it’s close to impossible to even pronounce it. Thank goodness they just went with MS. But as I had questioned before, what the heck is it and what do I do now?
This is one of the main reasons I decided to become a health coach for people who are newly diagnosed with MS. I remember when the bomb was dropped over the phone by a neurologist I didn’t really know and couldn’t really understand and that I felt relieved to finally have an answer but clueless about how to do deal with it.
I was referred to a different neurologist who was the MS specialist. He said I’d probably had it for about five years based on the innumerable lesions seen on my MRI, and then heard “these are the scary drugs I suggest, take a look at the brochures and decide which one freaks you out a little less and we’ll go with that as soon as possible.” (Not an actual quote, but that’s what it felt like to me.)
I didn’t know what to do with that seemingly vague information about a disease I didn’t know anything about or drugs that had a laundry list of terrifying side effects. My amazingly supportive hubby and I looked through what we were given, trying not to lose our minds over the unknown future, and made a choice. We did this ourselves, and with lots of web searching, but no real support or guidance from the “specialist” in this disease.
I asked my group how they felt about the way they were informed of their MS diagnosis, and I got answers that were similar to my experience. Doctor came in, told them the news, and walked out, or were told and then sent to another doctor. They were relieved to not have a brain tumor (I had said the same thing about my first MRI), scared and confused from having no clue what MS is and not having anyone kindly explain it. Only one said that their doctors were patient and supportive. That is just sad and unacceptable.
I don’t want others to feel like I did, left with this confusion and on my own to figure it out in the long gaps between short appointments.
I’ve been there, done that, and can be your support when you’re feeling lost. Get in touch and we’ll talk.
In other news, I took a much needed break from the roller coaster ride to witness the total solar eclipse last week with family in Oregon. It was incredible! The weather was perfect and when the sun vanished and I could take off the glasses I was absolutely stunned. I could see planets and stars at 10:15 a.m. and the white glow of the sun’s corona was spectacular.
Thinking about it a few nights after our return, I realized that the beginnings of MS are similar to a total eclipse. Things start getting darker bit by bit as the symptoms progress, brain fog sets in, questions cloud your mind, you literally stumble through life, and then black. You have been diagnosed with an (as of yet) incurable disease. You can see the glow around it as the memories of your life before and it’s beautiful, but you’re in the dark, and are waiting for the sun to reappear. And it does, every time! I promise. It may be slow and feel like it’s taking forever, but the sun is always there.
Life is beautiful! We just need to remember the light and move toward the wellness.
Let me know in the comments below how you felt about the way you were told the news about your MS diagnosis, or any other troubling medical news.