Robin St. ClareFeb 16, 2023
Joshua Zimmerman

One thing I've struggled with on Mastodon is finding people and communities who post things that I'm interested in that are outside of who I currently follow.

Can anyone hear point me at folks who talk about chronic pain, disability and autoimmune issues? If not, boost for reach?

Edit: I specifically want people and not hashtags. I know how hashtags work. I don't want to use them.

Edit 2: I've got a good number of folks to follow. Muting this post now!

Feb 14, 2023 at 11:47pmWeb
Show threadJoshua ZimmermanFeb 14, 2023
Cc: @ChrisShort and @juliaferraioli who may have ideas?
Show threadChris ShortFeb 15, 2023
@TheJewberwocky @juliaferraioli I think I'm just as lost. I feel like a lot of folks in tech came to Mastodon and that's where it stopped.
Show threadK.J. ElphinstoneFeb 16, 2023

@ChrisShort @TheJewberwocky @juliaferraioli

Persistence works. But I remember it was the same when I first joined Twitter, for ages it just felt like I was in a sea of nonsense, and the more I used it the better it got in terms of relevance and community. It's the same here. And I can be pretty darn persistent lol

Show threadJoshua ZimmermanFeb 21, 2023
@ChrisShort Its really helpful to hear this, means its not just me having that problem. :)
Show threadJoshua ZimmermanFeb 15, 2023
All the people advocating for me to just use hashtags long after I modified to say that's not what I'm asking for are making a great argument for why I don't want to follow hashtags.
Show threadtranzman77Feb 15, 2023
@TheJewberwocky hashtags aren't for everyone. On the bird site there were trolls and some very highly academic tags on disability and lgbt rights got hijacked. It'll be easier on this platform to report any horrible behaviour but i think it'll take a while for things like this to be fully realised as twitter did a good job of not keeping any rules.
Show thread⁂ Fish Id WardrobeFeb 15, 2023
@TheJewberwocky don't follow hashtags, but search for them to find new users to follow?
Show threadFadeFeb 15, 2023

@TheJewberwocky Goodness, it's impressive. Especially all the responses that seem to assume the issue is "I miss Twitter algorithms" and not "I would like to follow specific people, can you vouch for someone?"

I've noticed that Mastodon has a lower trolling rate than Twitter, but a much higher 'splaining rate overall. Alas.

Show threadJim LillicotchFeb 15, 2023
@TheJewberwocky
Hashtags are absolutely the way to do it on Mastodon. Your arguments are not great. Sorry, but maybe you should be somewhere else that works the way you want.
Show threadJust StaciFeb 15, 2023
@TheJewberwocky a) I don’t see where you edited about that at all. B) you don’t FOLLOW the hashtags. You click on them and use them to find humans to follow, or put them in your own posts, and let other people do the same. Nobody is suggesting you just follow random words. They are suggesting you use the words to find the humans!
Show threadC.W. SmithFeb 16, 2023

@TheJewberwocky

And from my experience so far, hashtags only help with content within the sphere you already inhabit. It sort of is the exact opposite of what you were asking for.

Show threadNontechie Talk Feb 17, 2023

@TheJewberwocky Another approach that is widely recommended is to add your interests to your profile.

It appears you haven't done this either. It's not unreasonable to ask - if you want help, but you're unwilling to try to suggestions that might help, do you really want help?

And, if you don't want to try anything, at least quit wasting people's time who tried, in good faith, to help you.

Show threadpodkaynelivesFeb 15, 2023
@TheJewberwocky Besides the other hashtags mentioned, you can follow hashtags for specific conditions, like #Fibromyalgia and #LongCovid. A nice community of folks in those hashtags!
Show threadCavedale RhΓ΄nesFeb 15, 2023
@TheJewberwocky Try @vlrny also for her acerbic wit!
Show threadValerie RoneyFeb 15, 2023

@CavedaleRhones @TheJewberwocky
Aw.... Thanks! πŸ’›

*googles acerbic*

Show threadValerie RoneyFeb 15, 2023
@CavedaleRhones @TheJewberwocky
Ah! I was confusing it with Vit C. But either way, tart yet fortifying probably works. :)
Show threadSigrid EllisFeb 15, 2023
@TheJewberwocky Well, I do. But, not, like, in a broader sense, just about my own shit.
Show threadJoshua ZimmermanFeb 15, 2023
@sigridellis that's still super helpful as I learn to navigate my own shit. :)
Show threadGATEKEEPERFeb 15, 2023
@TheJewberwocky @sigridellis YouTube has some good info on inflammation. Dr. Berg is awesome.
Show threadtranzman77Feb 15, 2023
@TheJewberwocky hi, not been around all that long but i have MECFS which causes chronic pain and brain fog among other lets say, symptoms society would consider taboo. Also trying to persuade my doctor to test for POTS. I post a bit about my own stuff and boost others. Currently in bed but saw this and wanted to respond so wouldn't lose it tomorrow.
Show threadKoltFeb 15, 2023

@TheJewberwocky the disabled.social instance has a bunch of folks with all of the interests you listed. can’t really point to any particular people off the top of my head, though πŸ™‚

hope you find more and more folks 🌈✨

Show threadJoshua ZimmermanFeb 15, 2023
@KnivesOnly I didn't know about that instance before people mentioned a couple folks there. I think I'll poke around there to find more folks. Thanks. :)
Show threadLydia SchochFeb 15, 2023

@TheJewberwocky @mathtans If you happen to have migraines, #MigraineChat is a great hashtag.

I’m not aware of any others, but I’ll boost you to see if anyone of my followers know.

Show threadanubis2814Feb 15, 2023
@TheJewberwocky I follow quite a few but can't think of them off hand but the disability hashtag should get you people
Show threadAirplanista πŸ‡ΊπŸ‡¦Feb 15, 2023
@TheJewberwocky Joshua, the best way is search and save the hashtags for those topics. It is like building your own algorithm in your timeline.
Show threadWe're Not In Kansas AnymoreFeb 15, 2023

@TheJewberwocky

#chronicpain #health #disability #autoimmune

Show threadOsteoarthriticAutisticFeb 15, 2023
@TheJewberwocky
A lot of us on disabled.social do but you can follow hash tags on Mastodon not just people. That should help.
Show threadEl DuvelleFeb 15, 2023
@TheJewberwocky Have you tried looking for relevant hashtags?
(That being said, I have a similar problem as you, and I think we can only see the hashtags from posts that our server already knows about anyway (?) so it may not be that helpful… but good luck!)
Show threadOliver (emotional verfΓΌgbar)Feb 15, 2023
@TheJewberwocky 1) The usage of hashtags is recommended.
2) Follow gup.pe-groups like @disability - you'll get all toots boosted that mention it.
3) Have a look at https://fediverse.info/explore/people and feel free to join the directory
And have a good time :-)
fediverse.info

The bespoke fediverse guide and people directory.

Show threadNaughty Tides πŸ³οΈβ€πŸŒˆFeb 15, 2023

@TheJewberwocky I do mostly politics, and I used hashtags to find people.

I also use hashtags in my posts.

That seems to help them reach the intended audience.

Show threadWizard Bear (πŸ’‰x8 + 😷)Feb 15, 2023
@TheJewberwocky You can follow hashtags in addition to other people. You can also Explore hashtags to see if they will help find people you may want to follow. I've found these methods pretty helpful.
Show threadBruce Halperin Feb 15, 2023
@TheJewberwocky I would suggest finding a few accounts to follow via hashtags, and then following more using a tool like Followgraph (https://followgraph.vercel.app).
Followgraph for Mastodon

Find people to follow on Mastodon by expanding your follow graph.

Show threadDextersHumanFeb 15, 2023
@TheJewberwocky I’d love to hear what you find. Also suffer from chronic pain.
Show threadSam LevineFeb 15, 2023

@TheJewberwocky
[email protected] definitely does.

You might try following the hashtag NEISVoid (it stands for "no end in sight void" and it means the person with a chronic illness doesn't want sympathy or suggestions since it's their life for the foreseeable future)

Show threadcrossgolf_rebel - kostenlose KwalitΓ€tspostsFeb 15, 2023
@TheJewberwocky usw Hashtags in Posts and for search.
Abd also hell can @mastodir

And, we all have also spend time to find the timeline for us. πŸ˜‰
Show threadStephenCFeb 15, 2023
@TheJewberwocky Use hashtags #ChronicPain, #disability and #autoimmune and you will be on your way.
Show threadPeterD πŸ‡©πŸ‡ͺ πŸ‡¨πŸ‡¦Feb 15, 2023
@TheJewberwocky You are not going to like my advice. Hashtags work and make finding like-minded people easier. I search on #ClimateChange. You don't have a bio - at least one I can see from my instance. If you had I would boost it. Also your "follow" and "follower" count" should be equal. Sorry - for being very direct but....
Show threadMike DFeb 18, 2023
@peterdeppisch @TheJewberwocky
I saw the original post and ignored it. He don't want no hashtags.
Show threadit's B! Cavello 🐝Feb 15, 2023
@TheJewberwocky so far, hashtags or looking at people’s follow lists have been some of my best strategies. Sometimes I like to look up kinda unusual phrases and things related to my interests to see what obscure hashtags other people might be using.
Show thread❄️Faerie❄️Feb 15, 2023
@TheJewberwocky Try looking at the timeline for disabled.social.
Show threadAmiW Streetart ❄️Feb 15, 2023
@TheJewberwocky WelcomeπŸ’• but without hashtags here, is like without topping and cherry on the cupcake. 🧁 πŸ₯Ί
Show threadDarrenFeb 15, 2023
@TheJewberwocky got it - no on hashtags but I have found temporarily following a hashtag and then just following the people who seem to be posting quality material (then unfollowing the hashtag) effective
Show threadCourt Cantrell won't conformFeb 15, 2023

@TheJewberwocky You can follow me! I have multiple chronic illnesses. I haven't talked about them on here yet, just because I'm fairly new and have been focusing more on following fellow writers. But the chronic stuff is stuff I deal with daily, so it will show up at some point! (Actually had a flare-up this evening and planned to post about it tomorrow!)

Is there any things specific on your mind concerning chronic illness?

Show threadrevheath Heather CracknellFeb 15, 2023
@TheJewberwocky @jpuddlegoose is a good follow and she is very well connected too!
Show threadYingtaiFeb 15, 2023

@TheJewberwocky I talk about it once in a blue moon. https://justmytoots.com/@yingtai@zirk.us

I do have friends who talk about it more often. I'll ask if I can pass on their contacts to you.

Also, you might possibly find people on the local timeline of longcovid.social? https://longcovid.social/public/local

JustMyToots

Show threaddr elmyraFeb 15, 2023
@TheJewberwocky hey hey. I have #MECFS and not enough spoons to actually talk about it much but I do boost things?
Show threadJulieBFeb 15, 2023

@TheJewberwocky

@vlrny

Show threademmessennFeb 15, 2023
@TheJewberwocky I talk about disability and chronic illness sometimes, occasionally this intersects with my journey as a SWE student, I'll use hashtags on those posts if you're searching.
Show threadSabreToothTigress/ZenDragonessFeb 15, 2023
@TheJewberwocky Have still Not understand all mechanics. Sry
Show threadTexan_ReverendFeb 15, 2023
@TheJewberwocky One good way to find people talking about any given thing is to search that term as a hashtag. Here are several hashtags regularly used by people in the disabled/chronically ill communities you asked about:
#NEISvoid (No End In Sight void) #Disabled #Disability #AutoImmune #Immunocompromised #ChronicIllness #ChronicPain #Spoonie #Spoonies
Show threadSomersetWhovian πŸ‡ΊπŸ‡¦πŸ’™Feb 15, 2023
@TheJewberwocky
Do add a bio and a pinned introduction post, as many people are less likely to follow someone who doesn't have one. And yes, hashtags are the way to go - at least initially.
Show threadStarkFeb 15, 2023

@TheJewberwocky One thing about #mastodon is that you need to use #hashtags to get into a certain #topic.

I agree with you that the problem is that they can easily be #hijacked and also become irrelevant. This post will be listed with any posts involving #hijacks or #news.

One way to join #communities relevant to your interests is to join #instances dedicated to your interests. I joined a #technology #instance, and I am looking for something relevant to #3dprinting because it is the main topic that I publicly discuss on #socialmedia.

For more specific and isolated #topics and #communities, I use #reddit.

So I would recommend researching for relevant groups discussing something like #chronicpain and joining their #instances, or maybe just join a #subreddit. Which might not be the answer you are looking for, but #reddit is great for specific and longer posts regarding such topics.

Show threadStarkFeb 15, 2023
@TheJewberwocky Another thing that will help improve on your desired experience is the idea of #groups as suggested by @atomicpoet which would allow for more closely nit and better moderated groups similar to #subreddits on #reddit.
Show threadFiXatoFeb 15, 2023
@TheJewberwocky maybe the admin of https://disabled.social/ has some suggestions? Unfortunately (but understandably) they don't seem to have a public timeline visible.
disabled.social

A place for people who are chronically ill, mentally ill, disabled, and friends/families/allies to come together, meet, share knowledge and random banter, and just about anything else.

Mastodon hosted on disabled.social
Show threadJeroen BaertFeb 15, 2023

@TheJewberwocky hey Joshua. I've listed some directories/discovery tools here: https://www.forceflow.be/2022/11/11/moving-from-twitter-to-mastodon/#finding-more-interesting-people

Maybe that can help?

Show threadMoose Jolly HolcombFeb 15, 2023
@TheJewberwocky The only one I can think of on here is @Tinu who talks about he Long COVID experience and engages with others on their energy limiting disabilities. But overall most of the people I follow on Twitter haven't moved over here yet, so I haven't seen much.
Show threadJon_ThinksATYouFeb 15, 2023
@TheJewberwocky I am those things. I don't generally talk about it much. From the tag activity that seems to be the same for others. Boosted
Show threadSoNotNic πŸπŸ‰πŸˆFeb 15, 2023

@TheJewberwocky

I live with chronic pain, but I rarely post about it. I mostly post photos of my cats, who often identify the part of my body that hurts most and lie on top of it purring loudly.

Also, I respect your choice to do things your own way, but following and searching hashtags works remarkably well on Mastodon. The only hijacking I've witnessed so far is the annual SuperbOwl joke (but surely even fans of American football love stunning photos of superb owls). Trolls get stopped here

Show threadπŸ³οΈβ€πŸŒˆ Lian Li 李莲 ✊🏿Feb 15, 2023
@TheJewberwocky I found @Tinu to be very insightful