StephenNov 18, 2022
Dr Ro Smith

Please keep inviting your disabled/chronically ill friends to things. We can't always come, but it means a lot to know we're still wanted.

My social circle has dwindled *dramatically* since I got sick, and the pandemic cut off 80% of what remained.

Even if I say no a lot it doesn't mean I never want to come. In fact, it means I want to see people more, when I'm able.

Nov 13, 2022 at 5:52pmWeb
Show threadDr Ro SmithNov 13, 2022

Wow, OK. This took off faster than I can keep up with the notes. I didn't know that was a thing that could happen on Mastadon!

Thanks for the faves and follows! Isolation, disability, and chronic illness sucks.

Show threadCaitlin mka KatieNov 13, 2022

@Rhube
You've spoken up my mind and hearth ..😘.

80% friendloss is much but i'm actually on 100% since abt 3 years ago by reasons... and no one wanted to believe me that this is the reality; no medical assessor of my Health insurance not even some governmental ppl...
they always wrote one as minimum and normally i was then shortly on getting a very bad an agressiv temper for not noting the reality.....

Show threadDr Ro SmithNov 13, 2022
@fenriswitch That really sucks. I'm so sorry you're having to deal with that. It's very hard to manage on your own.
Show threadCaitlin mka KatieNov 13, 2022
@Rhube
the only crazy positiv thing is that i never got Covid so far my Doctors told me - got 4 jabs instead *lolz*
Show threadDr Ro SmithNov 13, 2022
@fenriswitch Congrats on the jabs! I got COVID in April 2020 before there were any jabs and it really fucked me up. Doing better now, with the existing CFS it's been a very slow recovery, and because the government doesn't recognise that CFS makes you vulnerable, I can't get a fourth jab.
Show threadWho? (Tam) Nov 14, 2022

@Rhube talking of isolation, just realised I've left the house twice in two weeks. Once to get my hair done and once to take the cat to the vet.

On the plus side, I've tidied my bookcase lol

Show threadDr Ro SmithNov 14, 2022

@The20thDoctor Yeah, I hardly go outside anymore. I haven't had my hair done since the pandemic (two weeks before the first lockdown I got an undercut, so that's been INTERESTING to grow out).

But, I have just got a mobility scooter, and I'm hoping that will help.

Show threadCrazy PonyDec 22, 2022
@Rhube unfortunately i have to agree from my own experience
Show threadDr Ro SmithNov 14, 2022

On Twitter, a person might use a post going viral like this to say something like:

If you you enjoyed this, you can always buy me a ko-fi https://ko-fi.com/drrhube or read this story I wrote called 'Homely Magic' https://distantshorepublishing.com/2021/06/18/homely-magic/

Is that a thing one does on Mastadon?

Show threadMax KaehnNov 14, 2022
@Rhube I would more expect that in a pinned post, which would appear just below your profile when someone clicked your name on a boosted post to see what your usual posts look like, when considering following your account.
Show threadDr Ro SmithNov 14, 2022
@mithriltabby Yes, I know what pinned posts are, I have one of those.
Show threadMelindaNov 13, 2022
@Rhube
You are absolutely right. Also seeing people is made more difficult as finding outdoor places to meet up is not easy this time of the year. I know one such place and will be meeting a couple of friends there next week. So many things are indoors, and I agree with you that covid had greatly reduced contact with people. It is all very different now.
Show threadDr Ro SmithNov 13, 2022
@Melinda Yeah, I hear you, especially as we head into the colder part of the year. I'm lucky to have a couple of households I trust to be reasonably careful that I can hang indoors with every few weeks. But I miss having a wider circle of friends.
Show threadMelindaNov 14, 2022
@Rhube
It's hard whatever way you look at it. I do zoom with some people, that can be ok, but not perfect. Things like theatre trips, meals indoors in restaurants are just not going to happen for me. If there was more mask wearing then I'd feel a theatre visit would be more feasible, but there's less and less of that. People genuinely seem to think it's mild, until they catch it. On plus side, I see more of nature, time for hobbies, am practicing my French more than ever before, it's different.
Show threadRebelNov 13, 2022
@Rhube oh I hear you, lost my whole social due to covid.
Show threadDr Ro SmithNov 13, 2022
@RebelLookingForACause I am very grateful to the small number of people who've stuck by me, but I hate how needy it makes me.
Show threadKevin Morgan 🪐✈️🏴󠁧󠁢󠁷󠁬󠁳󠁿🎸Nov 13, 2022
@Rhube this deserves to be amplified loud and clear. My disabled daughter (shortly turning 18) rarely got invited to parties / gatherings by peers. Presumably because they didn’t know what to do / how to cope. But it hurt like hell as her dad
Show threadDr Ro SmithNov 13, 2022
@mistuk 💗 Especially as a teenager, that's very hard. I'm sorry she's having to go through that.
Show threadKevin Morgan 🪐✈️🏴󠁧󠁢󠁷󠁬󠁳󠁿🎸Nov 13, 2022
@Rhube thank you.
Show thread@Lee_in_IowaNov 13, 2022
@Rhube so much this! Don’t be angry with us if we say yes and then are hit with a bout of our illness and cannot come after all. The will is there, but our bodies fail us. #Disability
Show threadElse LNov 13, 2022
@Rhube thank you for this advice. It is helpful.
Show threadMojosueNov 13, 2022

@Rhube
Know how you feel. I stopped being honest with how bad everything felt decades ago.
Friends just end up feeling helpless and depressed cos they just want you to be well.

Eventually you have to understand how they can help you so they can feel helpful and you feel on control of the help that is coming to you. x

Show threadjanestegerlewisNov 13, 2022
@Rhube this is me too. I can’t go but I still want to be invited and remembered. Thanks for saying it 😀
Show threadDr Ro SmithNov 13, 2022
@janestegerlewis No problem - it seems a lot of people are having that feel. *solidarity*
Show threadFagAshLilithNov 13, 2022
@Rhube and when we have good days we absolutely want to squeeze every last drop of joy and fun from them, because we don't have the luxury of knowing when it'll happen next!
Show threadStarsquare EnterprisesNov 13, 2022
@Rhube well said.
Show threadNicWitchNov 13, 2022
@Rhube couldn't agree more. I've lost all remaining local friends since the pandemic started. It sucks. I'm more isolated than ever.
Show threadDr Ro SmithNov 13, 2022
@NicWitch Ah, that really sucks. I am lucky have have some local friends who have been good to me during the pandemic, but it's still been hard and it sucks feeling like I'm burdening them.
Show threadBigbreakfastNov 13, 2022
@Rhube Thanks for the reminder, I've been guilty of saying, oh but they always say no. I'll do better
Show threadJockamo Fee Na NayNov 13, 2022
@Rhube thank you for saying this. I often feel guilty for constantly saying no but you’re right, it means so much to be invited.
Show threadaprylaNov 13, 2022
@Rhube I'm recovering from a surgery that will hopefully solve some of my pain and the fact that I've heard from exactly one person during my recovery feels bad.
Show threadMiss DNov 13, 2022
@Rhube Feel the same way, even if friends know I can’t come just being invited means a lot
Show threadsandyknauerNov 13, 2022
@Rhube thank you for this. I am in the same situation, made worse by COVID because I will probably never feel safe around crowds or strangers again. At first, I was ashamed to cancel so often. Then, I learned to say, "I want to be there and will be if my health allows." Like you, it feels good to be invited with this understanding.
Show threadMizcherrymerrymuffinNov 13, 2022
@Rhube I feel your post so hard being chronically Ill you never know what cards you are going to be delt for the day but being excluded hurts. Just know you are not alone and you are worth many great days!
Show threadLunalight | ObsidianwingNov 13, 2022
@Rhube sadly true... nobody invites me .. im not welcome it seemes
Show threadKowalskiFlausn 🏳️‍⚧️Nov 13, 2022
@Rhube This.
Show threadVorlon1812Nov 13, 2022
@Rhube 100x this. My wife is chronically ill and I have become afraid of going out over the past 10 years. When we get invited anywhere we are so grateful, even though we usually don't go
Show threadMichelleGNov 13, 2022
@Rhube yes. We want to be invited and thought of. It is isolating and lonely to be chronically ill
Show threadS. KaethNov 13, 2022

@Rhube I also always feel terrible when I have to cancel, and I worry about having to cancel on people. It’s hard for me to say yes or commit because of that. And yet, that leads to dwindling social circle and my brain lying to me about not being anything enough. It’s hard.

All this to say thank you for posting this. I feel seen.

Show threadDr Ro SmithNov 14, 2022
@skaeth 💗 *sympathy* it sucks.
Show threadSiriusBlackNov 13, 2022
@Rhube I feel this and yet I find that eventually everyone does stop inviting you to things because they just figure you say no so often, why bother. It’s frustrating and disappointing that I can’t seem to ever get people to understand. Some get it more than others but rarely do people truly grasp.
Show threadSarah BNov 13, 2022
@Rhube and please don't be put off if we say no or can't attend after all. That's also no reflection of how much me want to be included!
Show threadrandmbitsNov 14, 2022
@Rhube as an introvert I also empathize with you.
Show threadTiberiusReignsNov 14, 2022

@Rhube

@OneJaeAtATime

Same thing for friends who are Parents! We rarely get out, but inviting let's us know we're still wanted!

Show threadJanarchy TargaryenNov 14, 2022
@Rhube I feel this so hard. It's unbelievable how many friends think it's ok to exclude me because 'we knew you couldn't make it so we didn't ask'. I'm chronically ill and a full time caregiver for me mom, but it's nice to be considered and at least to feel wanted, not a social leper
Show threadDr Ro SmithNov 14, 2022
@janarchy Exactly this - 'we new you couldn't make it so we didn't ask' = me never getting to hang out with them again, and that sucks.
Show threadCaffe NekoNov 14, 2022
@Rhube Same goes for your friends with depression or social anxiety. Don't think 'Oh they're really not a party person' or 'They might not be interested, it's too many ppl.' - Let them decide, don't leave them behind.
Show threadCaffe NekoNov 14, 2022
@Rhube Same goes also for your friends with small children. Too often ppl have a kid and are forgotten by all their child-free friends and it hurts. Let them know they are still a person.
Show threadWiseOldOwlNov 14, 2022

@Rhube Totally agree. When I was unable to attend anything, everyone stopped asking, even to come over for a visit.

I would give anything to be invited to things again. I hear you.

Show threadHRH ginsterbuschNov 14, 2022

@Rhube What also helps, at least if its a publicy open event / party / concert, is live streaming. There are enough platforms for this out there, pick one.

Even if we cant take part physically, it is still a joy to at least watch from the distance.

Show threadDr Ro SmithNov 14, 2022
@ginsterbusch True, although I've run into the problem that, for me, video calls are often overstimulating and I have to turn them down... which then means I'm not offered them again in the future. 🙄
Show threadHRH ginsterbuschNov 15, 2022

@Rhube Not video calls, but things like Twitch or other open formats.

That perverted zoom orgies that happened during the lockdowns were certainly .. ouch. And totally ableist.

Thought up by folks who never had any kind of "issues" in the first place. *sighs*

Show threadClaire PhillipsNov 14, 2022
@Rhube Thank you for this very meaningful reminder!!
Show threadJosh (Loki)Nov 14, 2022
@Rhube yes!!! This!!! Just because it's no sometimes, doesn't mean it's always no!
Show threadSimonProDNov 14, 2022
@Rhube True! Since I got Crohn my inner friends circle dwindled down to ONE - and surprise, he also has a chronic illness.
Show threadDr Ro SmithNov 14, 2022
@SimonProD that sucks. I'm glad you and your friend have each other, though.
Show threadSumana HarihareswaraNov 14, 2022

@Rhube I understand what you're saying, & I usually do keep inviting people if they indicate that they wish they could come.

1 thing that makes this tough is that, in many social circles, "wish I could" is also the exact behavior that politely indicates lack of interest, &, if repeated, is a "stop asking" hint + is rude to miss.

I wish we could change the widely-practiced etiquette for politely saying "never!" so that "not this time, thanks" could be taken literally more safely.

Show threadKCMONov 14, 2022

@Rhube

I have chronic illness but I'm makinga come back, it would be nice to get out with social crowds.

Show threadMrs. Katherine DurranceNov 14, 2022
@Rhube i like this post.
Show threadDr Ro SmithNov 14, 2022
@mrsvalley956 thank you!