I got a text from a friend the other day. It said that he was sorry for contacting me out of the blue with a bomb like this but – his wife had an MRI last week and they just left the neurologist’s office where they learned she has MS. I could hear the anxiety and fear in his message. And I remembered those first days of utter confusion and fear and time spent on the internet gaining new fear and having more questions than there were answers and, and, and, . . . .
My heart broke for them – as it does everytime someone has to hear those words: “you’ve got Multiple Sclerosis.” I wondered how I could best support these people. What’s the best way to help ease someone into uncertainty and answerless questions?
Start At The Beginning
I chose to start by telling my friend to take a deep breath. “It’s going to be okay,” I said. “It may not feel like it right now, but I promise, this is not the life changer that you think it is right now.” I tried to reassure him that there’s much that can be done to help mitigate the disease’s symptoms and progression. I shared bits and pieces of my story – and of many of my fellow FUMS’ers – to illustrate the point: we have MS, MS doesn’t have us.
I shared my initial symptoms, and how they’ve come and gone over the last 6 years. I explained that I’ve found coping mechanisms – and had to have my friends and family help me along the way. For instance, my kids have learned to let mom rest when I need it – and they’ve learned how to clean up after themselves and make themselves a sandwich. This MS stuff has paid off in certain ways!!!
To Drug or Not to Drug – That Is The Question
The doctor gave my friends the options of medications and 2 weeks to decide what they would do. It was obvious my friend was hesitant and felt over his head in this decision. Additionally, he mentioned the 2 week timeframe several times, leading me to believe he was feeling a time pressure in making a HUGE decision.
I explained that most people don’t actually get a diagnosis as quickly as they had (she started with symptoms 2 months ago, saw a doc and got an MRI a week ago and now has a diagnosis!!), and as such, they didn’t HAVE TO make a decision in 2 weeks. People go undiagnosed for years, and consequently, go without medication for years. Additionally, I have the distinct experience of having MS both while on medication and now, for the last year and 1/2, while off the medication. I’ll never counsel anyone to do what I’ve done – especially since this disease is so fickle both between different people and within the same person – but I certainly can share my experiences both off and on the medication.
What Does the Future Hold?
Ahh – the ultimate (unanswerable) question. As with all diseases – especially this one – the future is unknowable. And while that can be very daunting and overwhelming if viewed in the negative – it can be a GREAT thing if viewed in the positive. This woman was diagnosed with RRMS. This flare may be her one and only. Or – if she has more – they may be very small and manageable. Better yet – with all the incredible research that is going on right now – as we speak (or read!!) – the CURE could be found. Wow – given that kind of pep talk – the future’s so bright, I have to wear shades!
The bottom line really is that while we don’t know what will happen in each of us – every member of the human race can say the same thing. We all share the same bad prognosis! So I’ll counsel my friend to do the research and choose what she feels is the best answer FOR HER. And then I’ll tell her to breath. Deep breaths. Deep, relaxing breaths. Because, while none of us knows what’s in store for the future – none of us knows what’s in store for the future!!! :) Oh – and I’ll be sure to tell her to talk to the MonSter as it deserves: I’ll tell her to say “FUMS” everyday!
**Have friends and strangers come to you for advice about MS? How do you handle it? What do you say? Is there a resource you send them to or do you just talk them through it? Please leave a comment in the comment section below this post. I’d love to hear your thoughts. Thanks.
Sometimes it helps the stress, just to say F-U-M-S!!
Special thanks to our friends at www.FreeDigitalPhotos.net for allowing us to use this cool photo of a doc reading some xrays!!