PMR, GCA, Steroids, Rheumy’s, GPs and more… please more!

open heart more friends

Apologies, this post will only really make sense if you are a member of the “HealthUnlocked” PMR/GCA on-line health forum. 

 

I have both PMR and GCA and was diagnosed in November 2017.  I remember stumbling across the HealthUnblocked website and thinking, “Wow, what a fabulous site!” 

I knew I had found my new tribe. 

Finding people who could relate to my particular illnesses was the most amazing feeling, ever!  People out there, knew exactly what I was taking about…  I made a comment and they “knew,” they just “knew” what I was feeling, thinking and going through.

I learned very quickly who (as in which member’s post/comment) to focus on for the serious, educated, more informative response… and which member’s to seek out, for the more emotional, empathetic, “touchy/feely” responses, I might be craving.  All were/are welcome and very much appreciated…  it was just sometimes I needed to be educated and sometimes I needed a hug.

The thing I really liked about the site when I first found it (now remember this is 7 months ago) was the diversity.  Everyone seemed to have a voice and everyone was allowed to be heard.

Sure, there was the odd post that didn’t specifically speak to PMR, GCA or anything related to either; but that was okay.  Nobody seemed bothered or upset by that and I believe those posts gave us all a much-needed, albeit momentary, diversion from our personal hell, which is PMR/GCA.

A few minutes of blah, blah, blah about our gardens, cars, gun hobbies, children, holidays, grandchildren….  WHATEVER!  It was a few minutes of innocuous bantering that allowed us to forget that we weren’t just the unfortunate victims of some stupid disease!  We weren’t just patients, on meds, seeing GPs and rheumatologists.  We got to be real people, with real lives, interests and opinions; we did have other, valid and interesting things to talk about!

The conversations never really went “off the rails” did they?   

On-line forums are changing; they are growing and morphing at such a fast pace, that I believe the communities that support them, are finding it hard to keep up.

There are more and more people leveraging on-line digital mediums i.e. forums, as their primary source of news, communication, education, social interaction, companionship, etc.  And our new members are getting younger!  You only have to read the posts on HealthUnlocked PMRGCAuk to see that people who are being diagnosed with PMR and/or GCA are not just in their 70/80s anymore…  they are in their 40/50s!

As Bob Dylan said… “The Times They are a Changin.” 

It is only my opinion (and you can disagree with my opinion, but you can’t say I’m wrong, because it’s only an opinion!) that we as a community (a tribe, if you will) should try to keep up with the times.  If we are to continue to be relevant and meet people’s needs, we have to open our hearts and minds to what it is people want and need, out of the site.

I don’t think anyone is trying to purposefully transform the HealthUnblocked PMRGCAuk site into another bullshit website where chaos and insanity preside!  However, why can’t the site’s primary “focus” be PMR/GCA (and all things related); but still allow us the freedom to post the odd comment about immigrants, gardens, grandchildren, gun hobbies, cars, idle chatter, or whatever?  … if only just occasionally?

Those who want to respond and engage, can, while those who have no interest in (or disagree with) the post, can choose to disregard and not engage.  Not every post requires a response, especially if you disagree with it.  We all have a choice.

Isn’t it just that simple?

I believe we risk tumbling down that “slippery slope,” if we (the members of the community) try to impose our own personal beliefs of what should and should not be allowed, to be discussed, on the site.

If my PMR/GCA is effecting my sex life, am I allowed to write about it?

Some might say yes, some might say no.

If my religion prevents me from taking corticosteroids, to treat my PMR/GCA, can I post about that?

Some might say yes, some might say no.

If my husband leaves me, as a direct result of his inability to deal with my illnesses, can I vent about that loss and my grief?

Some might say yes, some might say no.

As one member has already pointed out, “politics” is inextricably intertwined with health care (especially in the US), and commented;  “… one would think it warrants discussion among us.” 

Shouldn’t we just allow the site Administrator(s) to do their job?  Perhaps we should let them decide what is and what is not “allowed,” to be posted?

I treasure this site.  I appreciate and applaud its relevance and importance.  I support it’s growth and success.  I just hope and pray the site does not lose it’s diversity, open-mindedness and openheartedness.

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12 thoughts on “PMR, GCA, Steroids, Rheumy’s, GPs and more… please more!

  1. I think the issue was us being asked to take political action. I think the administrator was correct in the action taken – effectively close discussion but not block our ability to “like” it, nor delete it. The person who posted originally could perhaps have worded things differently and that’s a lesson for us all.

    Liked by 2 people

    1. Hi, Thank you for your comment. I don’t disagree… I didn’t see the original “political,” post. I saw a post a day later, posted by another member, after Kate had already closed down the original discussion; it was titled, “Let’s keep focused.” And went on to say, “This is not the place to discuss politics please stop.” I just didn’t see the need for this post and wanted to know what else we were not allowed to discuss. I fear if individual members are allowed to dictate what we can and can’t discuss, we end up with a “majority” rules and a lot of hard feeling between members. I agree Kate needs to be able to do her job. She gets to decide, unequivocally, what crosses the line and what does not. Thank you again, for the comment and for reading the blog.

      Liked by 1 person

      1. I didn’t see that second post. It sounds like a reply on the original post, probably from a person who may have reported the post and got it quenched. I may have been the last person who got a reply onto that thread! So if this blog post is directed more to the second post, well I guess my reply here was a bit off point. Btw, I can’t find that second post.

        Liked by 2 people

  2. Hi anhaga1 Right. I forgot totally that I said to WRITE congressmen I should have stuck to I don’t pray…but if you do….. or maybe the fact I don’t pray offended some (I ALWAY pray on a plane! haha) Anyway. I assume you are also Heron NS who is as we speak saving my bones! Always love your input and now I have found your blog! Bonnie

    Liked by 2 people

  3. The original post (yogabonnie) and the one posted a day later (can’t remember the member’s name) have both been deleted… The second post had a lot of silly activity tonight and then of course someone complained that they didn’t want to see posts with a lot of silly dribble… so Kate deleted that one too.

    Liked by 1 person

  4. Am with you 100 percent. We all have a choice – if we don’t like the look of something – for whatever reason – we can scroll past and allow those who are interested in the topic to discuss it or read about it if they wish. Haven’t seen tonight’s posts – but hopefully this amazing site wont go the way of others – it’s too valuable to too many of us and teaches us information we don’t aeemnablentonger elaewhere. It would be tragic if it changed – fingers tightly crossed there is no long term place for narrow mindedness, people being judgemental or showing anlack of respect for others opinions, or curtailing people’s chat. We are here to help each other and let’s hope it stays that way 🙂 xx

    Liked by 2 people

  5. Some folks think they can hide from politics. Some think they can silence those with whom they disagree. Some think that by remaining ignorant, they can reduce their stress.

    I say poppycock, balderdash and hokum.

    I’m far more stressed when I don’t know what’s happening in the world. I’m far more stressed when I do nothing.

    The world didn’t stop because I got sick. And I didn’t withdraw from the world because I got sick. As a member of the free world, I have a responsibility to speak out. And while they can ignore me or erase me, I’ll say what needs saying, and at least a few will see it before the electrons are scattered.

    Liked by 3 people

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