Posted in Advocate, Health Activist Challenge, NHBPM

NHBPM Day 11 – If it’s not broke, don’t fix it

Today’s prompt: If it’s not broke, don’t fix it. What is working well in your community, healthcare, blogs, social media, or your work in particular? What do you like about it?

I manage and advocate for two online communities for Alliance Health, Arthritis Connect and Fibromyalgia Connect.  Support groups like the ones I advocate for offer people a place to give and receive both emotional and practical support as well as an opportunity to exchange information.  When you live with chronic illnesses such as one of the many forms of arthritis or fibromyalgia, you, your families and your friends find these to be a valuable resource for sharing information, getting confirmation about feelings, educate others or to let off steam. One of the things I consider to be most important and that works well as far as my sites are concerned is that if we can just offer people a place to vent and validate their feelings.  I am so big about insisting on judgment free posts.

I often caution members about comparing their pain to someone else’s.  I think that, as humans, we have this tendency to try to compare ourselves to others.  Either it leaves us confused or judgmental.  I tell members that their illness is their alone.  We are all entitled to feel everything we need to feel – our emotions, pain and other symptoms but no one understands that that better than you.  For anyone to explain what it is like for one person versus another isn’t even possible.  Pain is an individual thing and as far as understanding goes, unless someone knows that it is like to live in pain, it can really be hard to sympathize.  

Last year, after I lost my brother to cancer, one of my dearest friends honestly said to me, “I can’t begin to imagine what you are going through because I have never gone through it myself.  However, I am here for you no matter what you need.”  That is about the time I started to understand that people who didn’t live with chronic pain don’t really understand but it how they support us that counts more than anything.  I remember saying to myself after my friend said that, “That is true friend. Honest and loyal.”  No one is required to understand your pain but if they love you, they will support you.  That is something I often emphasize in my communities and it is something that has worked very well for me, as for the communities. In a perfect world, we would all understand each other but in an imperfect world, we can still support each other.

Doing this for nearly two years (two years in February), I have done my research on what makes a support group good.  I have a lot of backing from the people at Alliance Health, as they all have been wonderful, supportive and a great source of information from day one.  I feel both my support groups offer a good supportive atmosphere and while, good is different to everyone, there are certain things that stand out for me.  We, the people at Alliance Health and me, are constantly providing up to date information.  Further, I am always quick to respond to member – a goal of no later than 24 hours.  That is my rule, not Alliance Health. The site provides weekly newsletters, confidently, and information that members are seeking.  We also have access to experts, one those being myself (yup, tooting my own horn) but other community advocates who offer professional expertise.

If you have not had a chance to check out my sites, please do.  

This post was written as part of NHBPM – 30 health posts in 30 days:  

Last, Happy Veterans’ Day. Thank you for all those who have served our country, past and present. 





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