Social Networking sites are now the “Norm” for businesses, organizations, events, communities, causes and people. We are still learning the practices of these sites and how the rules work. You need to decide how much of your personal information you wish to share and with whom. It is important to introduce yourself to Cyberspace friends with a bit of caution. Recently, I was asked to “Friend” someone and it just didn’t seem right.
Some of you know I have a Facebook Group – Chronic Pain Journal. It has been a great way for me to reach many other people out there in cyberspace. It has helped me find support and I hope that I have provided some for others. Here are some of the reasons I value my Facebook Identity and the Connections/Friends I have made. For brevity’s sake I have put it in bullet form:
- There are people out there; whose situations are so much worse than mine. This has given me
- Gratitude for my situation
- Inspiration because these people are so brave and courageous
- Hope that I will get better and so will they
- There are various resources out there, such as
- Communities – like Chronic Babes
- Blogs – written by specialists, patients and friends/families of people like me
- Treatment options
- It has eased my depression in three different ways
- Misery Loves Company
- Strength in Numbers
- Knowing I am not crazy
Mostly, I am amazed that Chronic Invisible Illness knows no bounds. It does not discriminate. There are no boundaries for this very unilateral and politically correct illness.
It does not matter your:
- socio-economic status
- geographic location
It is also like a horror movie: it can getcha anywhere, any time any place; and you won’t know why. Which leaves us all vulnerable, emotionally, physically and spiritually. We are desperate to solve our pain and all that goes with it. So, we look to people who get it; because let’s face it, many of our friends and family don’t and can’t. Quite frankly, I am grateful this is the case, I would not wish this on anyone. However, it leaves us to make friends whose real faces and voices we probably will never see or hear, but they are extremely valuable to us. These Internet friends provide us a refuge for our fears, pains, situations, laughter and friendship. So, it bothers me to no end when I feel this little emotional safe place is being invaded by people who want to make money or have ulterior motives.
Every time I get a “Friend” request, I look at the profile. I want to know their story and situation. Maybe I can offer something to them and maybe they can give me insight, support or inspiration. Recently, I received a “Friend” request from what seemed like a female. I looked at her profile and there was something off. Here were some things I found off:*
- No photos other than a neutral Profile Photo – for those that are listed as people and not organizations, this is rather odd.
- No schools, organizations or things like that listed.
- There were 3 websites listed – two of which were for a Recovery/Addiction Centre – that bore the same name as her last.
- Under Television shows as a favourite – she had “Intervention”
- One of her “Friends” was the Dr. who is in charge of this Centre
I looked up the Centre and it is a place to go to if you have Chronic Pain and are on Medication. Apparently, they effectively deal with Narcotic Addiction linked with Chronic Pain. They also appeared on A&E’s show Intervention. OK – so I look for the name of the “Friend” and I could not find her. So the Centre is the last name of the Person who “Friended” me, the Centre is on Intervention – her favourite show, there are 3 websites listed for her all to deal with this centre and the first “Friend” listed for her is the Dr. who is in charge of this centre. Is it me?
Also on her Basic Information it says “Looking to help people suffering from chronic pain and/or addiction”. This doesn’t seem to me like a real person. Now, I could be totally off and wrong. It isn’t all that impossible that I am making an assumption. You know what they say about Assumption – it makes an Ass out of you and me. However, my skepticism makes me think that this is a front for a treatment place.
This bugs me – if you want to reach the Pain Community in Cyberspace – do it under your real name. To access our stories, private information and innermost details under the guise of a person is, in my humble opinion, disgraceful. We are people looking for a “Safe” place to express ourselves. We are sharing our thoughts with like minded people and are naive enough to think that most of us connecting are too. This “Profile” has 140 mutual friends of Chronic Pain Journal.
I am all for Recovery Centres and I do believe that pain medication should be strictly monitored by the patient and the prescribing Dr. Recovery Centres are a necessity for many and can save lives. However, having watched “Intervention” a few times – I fail to see the relevance to Chronic Pain Patients and that show. We have enough of a stigma attached to us because of narcotic use – this doesn’t help.
To my Cyber friends – I ask you to look carefully at who you are “Friending” on your various Social Networking Sites. Make sure you are comfortable with these people/organizations/companies knowing your personal information. If you are skeptical – don’t accept the friend request. Make sure you investigate or at least look over the profile of who you are “Friending”. Just because they have many mutual friends, doesn’t mean they have to be your “Friend” too. Some may have overlooked this and accepted the “Friend” at face value.
To the Companies – I ask you to respect our privacy. If you want to know something about us – introduce yourself properly – not as a Wolf in Sheeps Clothing. It is understandable that you want to make money. It is important to reach your target market. Just remember that we are people, whose lives are very fragile – physically, emotionally and mentally. To breech our privacy by pretending to be something you are not – is just not right. How is it possible to trust a treatment centre that begins its’ relationship in deceit? It does make me think your treatment methods are suspect.
I don’t want my Cyber community to be afraid to join any Online Groups, Communities or Pages. This resource can be more than a little helpful. It has provided me with so much support. It has let me know that I am not alone or crazy. I have learned so much from my “Friends” out there, providing me with inspiration, hope, humour and admiration. Something hard to find these days. For those to breech the walls of our safe place, is just awful. If you are looking to make “Friends” online, be sure you are meeting the people you want to. Ensure the information you share is at a level that makes you comfortable.
Present yourself clearly, if you are an organization – state it,
if you are an individual – state it & provide the information you wish,
if you are business- state it,
if you are a social/issue page – state it.
I also welcome people to share with each other – if they are suspect of someone. There is a “Report” option on Facebook – although I am not sure if they are actually breaking any laws – other than ethical.
*I have not included the name of the Female who tried to “Friend” me or the Treatment Centre associated – as I said – I might be completely wrong – so I did want to protect their privacy. It just didn’t sit right with me.