Much as I love all you guys .....

I've been thinking recently that the Forum is such a truly excellent resource for all those people struggling with this disease.

i have searched far and wide and not found such a compassionate yet knowledgeable or courageous bunch of kind people anywhere else in the Lyme world.

Much as i love you all as you are - it took me years to stumble across this site quite by chance - and it seems that this is pretty much what is happening for everyone else out there too.
it seems to me like we get only one or two new members posting each week and the rest of the time its just us regulars talking amongst ourselves (which is great in itself - i am not knocking it at all).

my question is - do you think we should be reaching out further to help more people find this place so it can help them with this hugely challenging time in their lives ?

completely open question -
i even have mixed feeling myself as i think i am spending too much time here as it is some days
but then more people means more knowledge and more helping hands too

The only thing I've tried to do over the years is let anyone know who I find out has or knows someone with Lyme about this site. It surprises me how many people know someone with Lyme, even family members. I have two people I know from high school who were diagnosed with it. Getting them to reach out and search for answers is another story.

My other thought is I've seen people come and go on this site for years, but some of those have provided answers or thoughts that helped. So while there are the "true blue" members, there are also the transient who sometimes bring something to the thought process.

And to be honest, I'd miss seeing comments or mixing it up with so many familiar names, including Garzie and Girlie. It was good to see Traveler's name after not seeing it for so long, though I wish she were 100%. I do take breaks to clear my head, but then I come back in the hopes I can try to add to a conversation or ask a question.

For what it's worth, those who have stayed are more important to me than some of the people I am "friends" with where I live. Without each other, I don't know we have a place of understanding or can provide understanding and comments/thoughts for others.

Years ago, I was on another forum. Seems that group kind of dissipated. This is home, to me, and a lot of you feel like extended family. Sounds corny, but it's the God's truth.

For me, the Healing Well site is more direct for answers, unless I have been looking at the wrong FB site in the past year. The FB group is good, but from what I've seen, it has a lot of inspirational posts and pictures, but not as many direct questions or a simple way to look up the history of a symptom one wants to look at.

The directness of this site (and the people, of course) is what I like so much. The simplicity of researching or finding as answer from someone. Maybe I'm missing something on the Facebook Group. And this is not a slap to the Facebook Group as I may not understand it and need clarification.

I know I’m new, but I’m in a local group that moved to fb. I loathe fb, and was super disappointed they moved there. The people in the group are very kind and nice and my family are friends with them. However, there’s just more knowledge floating around this forum. Also I think this group naturally ends up with people more focused and driven to fix their health problems since they probably joined because they were looking for more than what their local social circles could offer them. So it gives the group a different more substantive feeling.

Post Edited (Bailey) : 6/23/2021 6:25:07 PM (GMT-6)

I love this forum and feel so blessed that I'm part of it.

I don't believe forums like these are dying, I just think it has a different target audience. And that audience is smaller than facebook.

But that's ok, it makes it more personal. Even when new members join, I can recognize them in other threads by their username. That makes it easier to help them and get to know them.

As someone who used to work in IT (before I got sick), I'm huge on privacy and love that about HealingWell too.

Garzie you did scare me with the title of this thread haha, I thought you were going to leave!

Much love!

I found this forum quite by accident whilst researching in my endless battle with the doctors, having viewed hundreds (literally) of sites and forums I landed here and in the short time I have been a member, you have given me more hope and confidence that I can help my wife recover than I have had in many months.

Please keep up the brilliant work

Garzie,
I have actually been taking a break from the forum. I posted a little in the last couple of days. I spend an addictive amount of time here, and I am really needing to take a different approach. I need to focus on my spiritual health and am seeking divine healing from God. I am tired of trying to fix myself or hope for any doctor to fix me. So, if you don’t see me around as much, that’s why. I fully believe that I will be able to post my healing story here. Hopefully sooner than later.

I am not on FB and seriously doubt I ever will be. I hate the idea, don’t want my real name out there, and am not of the sound bite/acronym generations! I like detailed, meaty discussions. There was a lot more of that when I joined and especially before I joined. Back then, many members joined in the discussions, so it wasn’t just 2-3 people talking to each other (though any number is better than none). It’s disheartening that many are on FB instead of here.

I found this forum in 2017 while googling information about Lyme and bartonella. My searches would bring up old posts by Razzle and Traveler and others. I don’t know that exact time that google started censoring, but it’s been in the last two years. Now, it’s rare for a Healingwell post to come up. I use duck duck go now, but it’s not much better. Definitely not what I used to get. Someone somewhere is controlling things on the web.

I don’t know how to make this site more accessible on the internet. Maybe some of you computer folks may know.

I have mentioned this site to others before, but most people I know are not as interested in doing for themselves. I have mixed feelings about telling doctors about this site, as I fear that the wrong people could hurt our access to anything useful. There’s so much going on everywhere to control people and what they have access to.

Come to think of it, limiting access to health information on the web started a year or more before the global virus. Hmm. Coincidence? I doubt it.

Post Edited (WalkingbyFaith) : 6/24/2021 9:37:23 AM (GMT-6)

I have to agree with Astroman (Hi Astroman!!!) - Facebook groups did nothing for me - and I refuse to go back to Facebook at all now. It's too much stress, BS and fighting for my tastes - even in the Lyme groups (when I was last there, several years ago now). I also found it hard to follow and hard to find the information I was seeking.

I'm around again some - I won't be back 100% because once I get past my latest medical issues, I have a life to live (sorry, but it's been decades since I had a life to live!!). But, my little ole forum died out right after the pandemic hit, and I'm not so sure I want to try to revive it - and I used to direct new members that needed a lot of help/opinions over here anyway!! LOL! I know, not good for my own site, but my main desire is to still get people the help they need, not stroke my own ego.

I still tell those that I come across to come here, but I don't get out much now, so I don't see many people and my online footprint is pretty small these days.

I'd be open to helping get the word out, once some ideas are posted - LOL - all my ideas are going to help myself with my newest medical mysteries right now! =D

Well, thank you, Running Wild - it was a good idea, but that was about all! LOL! It's okay though. I se it as an experiment that didn't quite turn out as hoped - I've had a lot those!! LOL!!

I'll be over here mostly now though, but thank you for the continued support!! One really good support site is better to commit to than possibly dividing up people I believe.

JayPoppa - Evidently so. I'll check it out and see what I missed. But this is still where I would call "home" because I have found so much help here and feel like I know people in more of a personal way after so many years. I'm comfortable here, but that doesn't mean finding more information somewhere should be left out.

After 8 more than years of being on this site, it would feel odd not to be and share with people I "know" and trust.

OK - I'm back - thank you for your kind words and contributions to the discussion.

And don't worry I'm not going anywhere any time soon.

That said, there may eventually come a time when I have so much real world stuff on that priorities shift and I am unable to spend as much time here - but that would only be the natural course of things that I would wish for each of you too.

i don't see this happening in the foreseeable future though, as progress, although welcome, is slow and i still have a lot to contribute and to learn from you all here.

hopefully, if that point ever comes, there are new hands to take over.

this is somewhat linked with the thoughts in my first post.
how do we continue to ensure this place stays as good as it is today and even improve it so it can be an even better resource to help more people going forward.

society is changing
peoples attention has been commoditized and is being grabbed, manipulated and traded by more advanced platforms - such as social media platforms discussed above.
older less sophisticated platforms like this one that are run by users for users and don't really generate much revenue or tradable data for its owners - are getting supplanted by the more advanced tech.


this is one of the ways i struggle with these platforms - while pretending to be for teh users - they are really trading in human attention - and they are getting better and better at it all of the time.
90% of Facebook users ( equality twitter, Instagram etc etc ) think that these are just places to post their photos and look at me comments to their friends - but there is an great deal more going on - and its not at all about what's good for the users - quite the contrary
in fact it is adding to precisely the polarisation in our societies that is so evident today.

they also seem to be built around fragmenting attention - little soundbites - a picture - a comment - often from people with what seem to be very short attention spans. i am not blaming the people / users here - more the system they are hooked into and how its is designed and what its objectives are - its no secret that it is specifically designed to do that to them and to keep them clicking.

putting the owners motives and methods aside for a moment and looking at the practicalities/ usability often when i try to use these sites for a serious discussion - what I find is exactly what you would expect from a population with fragmented attention. Very brief and often incomplete responses, if you try to go back to someone for more detail they often don't reply ( presumably now have attention elsewhere) lots of completely off topic responses, unintelligible spelling and grammar etc etc

its not all bad of course - but these are the things that differentiate the best of the forum here - from the forums on there.

I also take the point that for most people - it is not anonymous to use Facebook - and Lyme and co-infections are so stigmatised this is an important consideration. you can create a false name and use that

so, i think that brings us back to, the majority here like what they get from the forum. Facebook doesn't work so well for them - and ultimately that's why they are here.

but back to my question of should we make an effort to grow our numbers, which would increase the richness of diverse views and experiences, help more people, and help offset the inevitable dwindling of numbers that has been occurring over the past few years and ensure a vital community going forward


if the answer for most is yes - then we should perhaps give some thought of how to do that

for instance we could each post something on 3 other sites to increase awareness of this one
if 20 of us did that - i think there would likely be a measurable bump in new members
i am sure others will have ideas also

i also think the topic of encouraging the less vocal or non-vocal members to participate is a good one too - not that there is anything at all wrong with coming and reading and learning - but the community benefits from the more voices that are here - so perhaps helping remove barriers to that first post might be a way to go - often i think the people would find a benefit and continue.

Garzie - It is great you brought this up two days ago. It appears, which is good, no one seems to have taken it as an attack on this site, but is has created a conversation I believe you wanted to see happen - how to improve and get more people involved. As this site usually does, it started a thought process and exchange of ideas/thoughts.

I'm like others on here who like the fact you can remain as an unknown by real name but people get to know the person inside the fake name. There is nothing to be personally be gained by getting involved except helping others and getting help for yourself. There is also a comradery in the group. We all share, at
least, one (miserable) thing in common and have the common goal of getting better.

You don't have to make your email address available, but even then you can make a separate email address for this site and people still wouldn't know who you are. I don't go that far, but it's a great option.

From a selfish point of view, I would actually miss a lot of people on this site, though you hope someone would one day not need it. But I don't know if that day comes for many as even when better, one has to be vigilant, even when you feel better. I made the mistake of not doing that and getting too confident. I've also learned if I ever feel a lot better again (and that is the hope), I will still stay to keep up with others.

So you have done a service, like you do so often here, for people.

astroman said...

Exactly. Those platforms are also obviously common to used "on the fly" via a phone, with little thought and little time invested..

*looks right* *looks left* *whispers* I use healing well on my tablet
*runs and hides*