I just received a wonderful email from my newest friend, Suzy, over at http://miss_suzy.typepad.com/my_weblog/ , or Tryin’ To Imagine Bliss blog. It was hidden amongst a few spam emails and an assortment of jokes sent to me by my “other” friends…you know, the ones without Multiple Sclerosis who send me periodic jokes to keep me laughing? And although I appreciate a good email joke on any day, Suzy’s email was the one that I was most delighted to read.
If you read Suzy’s blog, you will quickly discover she has MS, too, and also a wicked sense of humor about living with the disease and just plain living in general. I read her blog and a few select others everyday and I try (when I can) to go into a couple of MS chat rooms, just to “hang out” on occasion.
One of my non-MS friends asked me recently why I would even want to “hang out” with other folks diagnosed with MS and didn’t connecting with them depress me somehow? I suppose she was thinking the old “out of sight, out of mind” idea was a better way to deal with the disease than having it constantly in my face. I have to say, her comment got me thinking about why I DO choose to “hang out” with others with MS and what’s in it for me?
When I was first diagnosed with Multiple Sclerosis, I knew no one directly that had the disease. Having a background in healthcare gave me some limited knowledge, but not enough to satisfy my insatiable hunger to learn as much as I could as quickly as I could as a means of combating my overwhelming sense of fear. I did a search on the internet and stumbled into a chat space called, Jooly’s Joint. It is at http://www.mswebpals.org/ . At Jooly’s Joint, I met several people from around the world who had MS and I spent many hours in chat asking questions and learning from The Masters just what Multiple Sclerosis was and how to cope with it. I soon moved from being a scared “newbie” to one of the old hands, offering experience and advice to the newer diagnosed. I don’t go to JJ’s (that’s what we old hands call Jooly’s Joint) often anymore, but occasionally pop back into chat to see what’s going on. I am always amazed at how many newcomers there are, asking questions and trying to find answers.
Most of my chat time now is spent in a private chat with dear friends in England, Scotland, Canada, and others from the States…we became a close knit group from JJ’s and all share the same, common goal in chat…to have a mockingly good time and lively discussion. Most of us have been diagnosed and living with MS for a few years now…because we know each other well, it is a safe place to be irreverent about MS and any other topic that might seem offensive to someone newly diagnosed. We laugh a lot and laughter is always good for the soul.
I believe it is important to stay connected to MS in a healthy way. After all, it’s going to stay connected to ME for a very long time, so I might as well figure out ways to make friends with it! One of the ways I do this is in reaching out to others with the disease. And even though cyber connection is not a behaviorist’s optimal idea of connection, it IS a wonderful tool in meeting and sharing with people of a like mind. I hear their stories of living with MS and I am given the opportunity to share mine. This not only provides me with a wealth of knowledge and insight into the disease, but also lessens my fears of the unknown. It is through connection with others, I find a greater strength and encouragement to put one foot in front of the other and carry on.
I encourage you to seek out whatever connecting tool works for you in the management of your own disease, whether that is via the Internet, a support group, or the company of understanding friends or family.
MS does not have to be a lonely disease and you do not have to feel alone in dealing with it.