The Unspeakable Bits; From A Life With MS
For the past decade, I’ve lived with my diagnosis; for the past 25 years (probably) I’ve lived with symptoms of MS. For nearly seven years now, I’ve been the nominal leader of a community of people living with this disease through pages of the Life With MS Blog at EverydayHealth.com.
One thing I’ve read and heard over and over (and over) from people on my blog and when I speak to groups about MS is, “I thought I was the only one” or “I felt so alone…” These comments particularly come up when we converse about some of the ‘stuff’ about MS that people don’t talk about in polite company.
I am honored and humbled that the National Multiple Sclerosis Society has asked me to, on a monthly basis, address some of those dark-corner conversations and fearful topics in the coming year.
In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and – quite frankly – by many of us living with MS) to discussion. This evolution is not intended to be a grandstand for the doomsday set – quite the opposite. I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning.
By peeling away the layers of mist and fog and politeness, we hope to see the scariest parts of living with multiple sclerosis for what they are; possibilities from which we should not hide and about which I’ve felt better once I’ve acknowledged them.
In a world where the internet will get you answers to every question under the sun (and a certain percentage of those answers might actually be factual. . .) I applaud the Society for offering us the space to discuss the scariest questions about MS.
We have some basic starting points in mind for these discussions. If, however, there is one thing I have learned through my years of blogging it is that when we open these things up to the community we end up with a far richer conversation. To that end, I’d like to take this opportunity to ask you – the readers of The Unspeakable Bits – what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?
Will there be information in these pages that you might rather not read about? Likely. Do I intend to candy-coat any of the topics? Not A Chance. We owe it to ourselves to be honest.
Oh, by the way, I have also been told I’ve a bit of a “dark” sense of humor when dealing with these things in my own life. Were I you, I’d expect a bit of that to come across in these pages as well. I guess that it’s just how I cope…
People who live with MS are some of the strongest people I’ve ever met. I believe that by linking arms with one another and around the facts, we can raft ourselves together and survive the MS storm far more effectively than by swimming alone against a sea of rumors and half truths.
To this end, we will begin our conversations next month – the month which will see us acknowledging/celebrating Valentine’s Day – by discussing one of the most joyous parts of human life, but an element of life which MS has changed for many of us with this demandable disease.
Our next blog will open the bedroom doors to a conversation about Sex & MS.
What other taboo topics – what other “Unspeakable Bits” – would you like to see opened for conversation in these pages over the next months?
Wishing you and your family the best of health (and a Happy New Year!)
You can follow Trevis via his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.