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When you are first diagnosed with a chronic illness it is only natural to seek out others in the same position as you are, to find out information and try to fathom how this illness is going to affect your life. However, not all support groups are created equal; some are amazing resources of information and full of caring people, whilst others are more bitchy and toxic than high school ever was.
So how do you work out which support groups will actually support you and whilst ones will be a destructive influence in your life?
Firstly you need to decide what you want out of a support group and this can be very hard to do when you are emotionally vulnerable and in shock. Therefore I have written a Dos and Don’t list to help you find a great healthy support group.
Support Group Dos
1. Provide reputable information
2. Provide helpful tips to how to manage your condition
3. Give you an outlet to vent but gently reign you in if you get overdramatic
4. Have rules about personal attacks and inappropriate behaviours and moderators who will enforce them.
5. Have a sense of humour. Whilst having a chronic illness is no fun, it is important to laugh and enjoy life.
Support Group Don’ts
1. Allow members to verbally harass and/or abuse other members
2. Encourage members to try to outdo each other about how sick they are
3. Provide information that is incorrect or harmful
4. Focus only on what they can no longer do and never talk about what they can still do and accomplish
5. Foster a sense of negativity
When looking at joining a support group, read the messages that are posted by users to make sure it is a good fit for you. Reading messages posted by users will tell you straight away what kind of support group it is. I recently visited an Australian run chronic pain support group and was surprised about what a negative place it was. There were many messages abusing other members of the board and even a post by one user threatening to kill themselves before no one responded to a previous post of theirs. You do not want to get involved in a group like this. Some support groups will only allow members to read messages in order to provide privacy for their members. If this is the case, don’t be scared to join up and just watch the action before deciding if you want to stay and participate.
With email based support groups, take a look at the number of messages the group generates per day/week/month. Some groups will generate an overwhelming number of messages whilst others are like a ghost town. You need to decide what volume of email you can handle per day so that you don’t feel overwhelmed or like you are just talking to yourself.
One support group that I find is a very good example of how a support group should be run is the message board over at But You Don’t Look Sick. This message board caters for all people with a chronic illness with separate sections for each individual chronic illness plus a general area to talk about tests, doctors, mobility aids, work and even an area to vent. It also includes an area where you can talk about anything that doesn’t involve ‘being sick’. There is a sizeable team of moderators so at any time of day or night there is someone there monitoring the boards to ensure that the rules of appropriate behaviour are upheld and any problems that may develop are solved as quickly as possible.
Online support groups can help you move through the grieving process that accompanies being diagnosed with a chronic illness and find acceptance, but they can also stunt this process and leave you trapped in a world of anger and pain. For emotional well-being, it is vital that you find a support group that suits your style and provides you with the support you need.
However, as wonderful as online support groups may be, they can not replace supportive people in the real world. Whilst your online support team can commiserate with you and provide helpful tips, they can’t give you a hug when you need it or help with the shopping and cleaning. It is important to build up a great support team in both the online and offline worlds to make life with a chronic illness as rewarding as possible.
If you know of any fantastic online support groups, please let me know in the comments section. I will collate these and place them on the blog so that others can find them.