ONLINE SUPPORT GROUPS

Ask anyone who has found the right online support group if it has made a difference in handling problems or ailments, and the answer will always be in the affirmative. The right online support group can take you from feeling alone and isolated, to feeling understood, valued and educated. Today's online support community is bigger now than it has ever been. Any problem, or condition, any feeling or fear, can be met with understanding and empathy in this virtual world. It is not perfect of course. Some emotionally challenged individuals seem to exist only to cause distrust and dissention. Once uncloaked, they are eventually ousted from the community either by those who moderate the forums, or they move on to greener pastures where their contentious ways can wreak more havoc. Trouble-makers aside though, support groups are a wonderful thing. My personal experience is with online MS support groups. I will use them as my point of reference.

I have belonged to the same MS support group since 2000. I was referred to the site while I was posting on an entirely different site. To my delight, it was exactly the type of site I hoped existed out there in virtual-land. Since my initial discovery, it has remained by place of solitutude and comfort. It is one of those rare sites that combines empathy with knowledge, scientific and medical accuracy, and first hand experience of what works and doesn't work when it comes to treating MS symptoms. Although there are professionals who post information, there are no doctors or those who offer anything other than their own personal experiences. Those who are trained medically and who have MS are most treasured for their help, but they are not relied upon to replace a poster's own ability to make decisions that works best for them. Still there is something very comforting in knowing experience is just a mouse click away, especially if you need to read, "yeah, I think you should go to the emergency room", or "Yes, I agree you should report that problem to your doctor."

When newly diagnosed, there isn't much that doesn't worry you. The adjustments that need to be made are numerous and at times seem to be never-ending. I wrote about being diagnosed with a chronic disease previously. When I was a newbie, I felt totally ignorant about MS. I spent the first few months just reading all the posts that were already available. I got to know the board very well before I finally posted something of my own. Technically, that is called lurking on a site. I lurkedfor six months. Once I came out of the shadows, I was welcomed and encouraged to keep in touch. It wasn't hard to stay attached because I was always discovering something new which helped me adjust and sometimes even helped me to identify what was MS related and what was not. I remember being flabbergasted by all the nerves and muscles that could be attacked, slowed down or rendered totally useless by this strange MonSter.

The first time I learned I had a swallowing/choking problem was as a result of reading about it occurring to other MSers. At the time I had no idea MS caused choking difficulties. When you don't know you are experiencing a symptom of MS, you can't exactly tell your neurologist about it. When I finally realized it was a symptom, I told my neurologist and she was troubled to say the least. She set me up with my first high dose steroid IV, called solu-medrol. She had my swallowing ability tested and had me referred to a speech therapist for training on how to handle the situation. It was just one of the many times my support group came to my rescue and revealed a problem I didn't know had anything to do with MS.

Finding the right support group isn't too difficult. You do have to keep after it until you finally find a place that feels like home to you. Most people start off in the same manner. We all google our disease, or condition, or feeling to see what's out there. Many major diseases have an official web site which in turn has its own authorized support group. For example, googling Multiple Sclerosis brings up the National MS Society, which in turn links interested parties to its support forum, www.msworld.org

The support groups that are the most successful have members who build such a closeness on-line that some actually share their private information and form true friendships off the forum board. Finding out someone shares the same condition as you, and just happens to live in your state or even your town is an exciting moment many have shared.

The best boards seem to be the ones that have a lot of traffic each day. With a large number of people logging in, you have a greater post rate, which in turn means questions are answered more quickly and folks keep in touch more regularly. Two such boards that fit this example are www.msworld.org and www.braintalk.org

A strange exception with braintalk is that it doesn't readily come up on google unless you know to type in 'braintalk' or unless you happen to google "neurology support group". That is unfortunate because I don't know too many people who would google neurology over Multiple Sclerosis. This oddity brings me to my next tip which is to ask around for recommendations of good online support forums. We can't always assume all good sites will readily jump out at us on google, we might need recommendations or google key words not so commonly searched.

YAHOO, MS WORLD AND BRAINTALK are very large on-line support groups.

The biggest difference between Yahoo and the other two, is that Yahoo is a list-serve support group. That means it is an e-mail based support group. If you would rather receive e-mail over live interaction, then list-serves are for you. Yahoo at one time claimed 25.966 groups. I am not sure if that number is still accurate, but there is no doubt that it contains MANY groups. Sites like MS World and Braintalk are message boards. Little e-mail is sent from message boards. Interaction occurs instantaneously which is terrific if you have a situation in which more immediate help is needed. What matters most is what you want from your support group. A fellow hubber has written a review on Yahoo groups, please check it out if you would like more info about this type of list-serve support group.. http://hubpages.com/_3tb885z6vqpt9/hub/www-yahoogroups-com

As an example of the instant posts received on a forum board, I remember I was on-line when 9/11 occurred, I was informed first from my support group that a plane had hit one of the towers. I turned on my television to my horror. Afterward I was amazed how quickly I knew about it, just because of my MS support group.

There is so much diversity in large and active support boards. Using MS World and Braintalk once more, notice the interesting statistics:

• Members: 28,231 for MS World. 28,212 for Braintalk
• Posts: 946,746 for MS World 334,325 for Braintalk
• Threads 79,410 MS World 48,031 for Braintalk

SUPPORT GROUPS WORK IN ALL CIRCUMSTANCES. Have you recently lost a loved one in death? Are you depressed? Did you have to recently file for bankruptcy? Have you been one of the millions down-sized? What ever concerns you, is concerning someone else some place in cyper-space. There's no need to go it alone. Why fall deeper into a depression and continue to suffer the pains of isolation and despair? Take some time, do some digging and find the support group that is right for you. You'll thank yourself that you did.