Bumps in the road…
My candid opinions on a “support” group I was in…
I found a “support” group online recently that specializes in one of my rare conditions. I was very happy to find it as I have been going through all of this for over 14 years now and have never met anyone else in my area with porphyria or hemochromatosis. To be clear about this group, they advertise themselves as a “Non-profit organization dedicated to the health and well-being of individuals and families affected by porphyria.” Any medical information that is on their website has to be approved by their scientific advisory board. This is very important for people who suffer from this disease, and I have used this website as a source of information for a while. When they formed a support group on a social networking site, I joined.
Unfortunately, they began to change the rules after I joined. Some of the members were deleting others posts, which to be fair, can be done for legal reasons or in the event the information is false or slanderous. I have no problem with this. They decided to split the group up and make others responsible for administering the group. Unfortunately, it is on a social networking site where people should be free to help each other and make comments as needed. It is not on their own personal website where things need to be approved. It is a “social” site. I posted a link to my blog and got a few positive comments. I love positive energy. That is my purpose for this blog. Unfortunately, my comments and blog had to be deleted because it was not approved. My problem with this is that I am not giving medical advice to anyone, and I always encourage everyone to seek out their own medical advice. One of the persons then began to immediately post their own blog. They happened to be the new admin for this site. Things that make you go hummm.
The peculiar evil of silencing the expression of an opinion is, that it is robbing the human race; posterity as well as the existing generation; those who dissent from the opinion, still more than those who hold it. If the opinion is right, they are deprived of the opportunity of exchanging error for truth: if wrong, they lose, what is almost as great a benefit, the clearer perception and livelier impression of truth, produced by its collision with error. ~John Stuart Mill, On Liberty, 1859
Spread awesomeness:
I’d vote that group off my island.
Censorship is hard. Blanket censorship for no real reason is hard to understand. Perhaps the best thing to do is to read what they have to say and take yourself out of the political part of what is going on there. Something smells fishy as far as the removing non medical advice, so take heed and take leave of that situation.
Enjoy the advice, be comforted in knowing that you are not alone, and become a reader, not a joiner.
Sometimes removing yourself from a situation for a brief time until the fog lifts & you can see things a little clearer. Completely removing yourself may deprive you of some valuable info. And there could be someone there who will need you one day?? So, I think if I were you, I would just take a break, step away, and then come back & see what things look like then. I agree, something does not smell right. Good luck!!
I have taken myself out of that for a while, but you are right, someone might have needed help. Thank you for your comment:) I love to read positive thoughts and see things from a different perspective.
Aimee, thanks for the link to this post. Wow, I don’t even know where to begin, I agree with everything you posted. I’ve been feeling lately that unless you work for or are part of this organization, what you know and say is irrelevant. When I started my porphyria blog I had this feeling on the back of my mind that certain people wouldn’t like it. I wasn’t trying to take away from their, can I say bland, blog I’m trying to help, uplift, make friends, journal, organize and sort through all the information I’m gathering about Porphyria and a blog seemed to be the best way to do that. I was unsure of myself, but I’ve come to a realization that I’m not doing anything wrong! I was being careful to not break any laws and I’ll continue to not do anything inappropriate. I see peoples disease blogs all the time that have all kinds of information about their particular disease and what they’re learning and doing about it and that is all we’re trying to do too. No one can own a disease. I realize that I don’t know everything, in fact close to anything about this disease, but don’t I deserve the chance to learn and gather and share the information how I see fit? Keep up the great work. I love your blog and will continue to share the joy of your blog with other.
Thanks Amber! When I started this blog, it was to make others aware of what I have been through and to help newly diagnosed people not be so scared to live their lives. I personally believe that everyone is their own best health advocate, and that learning is a lifelong process. It never stops. So my blog is about learning from things, and I sure did learn something from that experience:)
My room mate (AIP) and I (caregiver)went through the same situation, quite likely on the same social networking site support group. It was tough, but there are other porphyria support groups on that site that have been much more welcoming and inclusive. And they don’t split people up based on acute vs cutaneous. Everyone has something to share, some kernel of insight they’ve gleaned, regardless of where the enzyme breakdown lies. This gives everyone the chance to share.
Yes Lila! I found a great group and they are very supportive:)