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Online Support Groups.
Helpful or Hurtful?

Online support groups can be both friend and foe to those living with chronic conditions. There are some hard and fast rules you need to follow when seeking online support.

There are two types of groups, those that adhere to strict rules about content and those that allow people to bond on a personal level.

  • The structured group: You must pick a topic before sending a message to the group, each post must be in the proper category. People can subscribe to what topics they choose to read, such as medical, support or humor. If you fail to follow the rules you risk being placed on moderation, which means your messages must be approved by a moderator before they reach the list.

  • Non-structured lists: The poster chooses the subject for each email and you only get in trouble if you use foul language, practice any form of hate, try to sell things or attack someone personally.

There are also doctors and other care providers who believe that joining an online support group will enable you to wallow in your illness instead of implementing changes that can improve your health. If you are unable to separate online relationships from your brick and mortar life an online support group may not be for you. You hear a multitude of depressing problems from people all over the world and there is nothing you can do. If you are able to listen and offer words of support or guidance without letting it affect your daily life than you will thrive in such a group. If you turn off your computer feeling depressed and beaten over the worlds troubles it may be time to walk away.

What can you do to make sure joining an online support group is right for you?

1) Once you are a member, read but don't write until you get a feel for the group. When you do choose to participate do not release personal details about your location or family until you feel comfortable with group members.

2) Learn how to identify those who are engaging and helpful and tune out the doomsday posters. You will recognize a doomsday poster immediately. They will be the ones that blame everyone for their health, yet they will shoot down any offer or suggestion to improve their situation. People in this category may whine constantly about the governments role in health care while never offering useful information and support to their fellow group members.

3) Find a group that fits your needs. Do you want information only or do you want to bond with others struggling through life with a chronic pain condition? Reading how a fellow group member momentarily forgot how to tie a shoe can provide a chuckle and provide you with the sense that you are not alone.

4) Avoid voicing your opinion on politics or religion unless you have joined a specialized group catering to your beliefs. In the melting pot of life, religion and politics are never a welcome guest and can cause flame wars and stress in a group that should be supportive.

5) Don't devote countless hours to any one group, make the flesh and blood people in your life a priority.

6) Remember that all of the symptoms and troubles discussed on any group are pertinent in the posters life, not yours. Don't let the posts of your fellow members drag you down, you can do nothing but offer support to fix them.

7) Avoid knee jerk reactions! Try to remember that group members are in pain, they may be sleep deprived, unable to work and riddled with family problems due to their condition. The one disadvantage to online support groups is the inability to see a persons face or body language. Something the poster may have said in fun may be interpreted differently when you read it. ALWAYS remember there is a real person, typing real thoughts into an email and try to respond as if you were talking face to face. A post may be nothing more than an angry vent born in pain and desperation. DO NOT fire off an angry email in response that you may regret hours later. Why cause more pain to someone already in pain?

8) If any member of the group targets you for abuse, do NOT reply or engage in flaming behavior. Send copies of the offenders email to the group moderator and let them handle it. If the offender insists on contacting you about the issue block their email address. They have no right to inflict their private causes or issues on you and you need to protect your health.

9) Do not buy into miracle cures sent by group members. Moderators try hard to keep spammers off their lists, but every now and then one will get through. If a group member tries to convince you to buy miracle water, magnets or anything else purported to cure FM either delete the email or report them to the group moderator.

10) Get to know group members before offering advice on their situations. If someone writes that they are lonely, you may not know that they are widowed, unable to drive and childless when you advise them to get out and meet people. Not everyone has family and friends available to care for them. KNOW who you are talking to before you offer advice that can make them feel worse.

There is a subset of people who will join a support group to validate their selfish needs. These people will whine, look for sympathy and rationalize their inability to improve their life. However, these people are few and far between. A good support group will cheer you on while urging you to try new things so you can improve your life. They will share medical knowledge and experience without holding you back.

Many "real life" friendships have come about due to online support groups, people who have connected and meet for lunch. Join a group, be careful to guard your health, energy and emotions and an online support group can be a big benefit in your life.

2009 - Jane Kohler
The opinions and comments of Jane Kohler are not necessarily that of the FMS Community or the CSSA org.

 

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