#kindness

Helloooo! Let's try this #introduction #mastodon.. #newhere
I'm Caroline from The Netherlands, have been eyeing all the beautiful #photography accounts (amongst others)
Hope to connect on this platform!
Other interests: #sleeptoken #coffee #sarcasm #mentalhealth #psychology #science #sciencefunfacts #metalmusic #blues #soul #love #kindness #helpingothers and so on

I'm not, in any way, shape or form a photographer but here are some shots 😆

A number of years ago I had an emergency that saw me land in the ER on Christmas Eve.

I remember struggling to think of literally anyone I could call to come be with me.

After all, people barely show up for us on normal days. Would anyone show up at Christmas?
🧵

It’s hard to be chronically ill at the holidays. Let’s be honest - it’s hard year round.

People are constantly treating us like burdens or they’re ignoring us altogether.

We spend a ridiculous amount of spoons fending off unhelpful & unsolicited advice

We’re always in pain, always exhausted and always sick. It’s hard to enjoy yourself when your entire existence is suffering - so holidays meant to be “joyful” can be bittersweet.

People expect us to push for their benefit. Put on a happy face. Deliver a convincing “I’m fine”

Nowhere is this more true than at the holidays.

If you’re newly chronically ill you may find that family and friends are uncomfortable around you. They don’t like being reminded of sickness - they see it as interfering with their joy.

They want you to participate in the holidays the way you used to - and they’re often not great at hiding their disappointment when you can’t.

Your disappointment rarely factors in. You just need to “try harder”.

It wears on a person.

If you’ve been chronically ill for awhile - you will no doubt have noticed that you get less calls, texts and cards. You’re slowly being disappeared. Annexed from people’s lives - especially at the holidays.

Can’t have that pesky reminder of disability and human frailty!

If you land in the hospital - it can compound the feelings of isolation and loneliness. I know it does for me.

No one shoukd be alone in the ER. We all need and deserve an advocate.

But who can you call at Christmas?

When you spend most of the year being treated as a nuisance, being told that you probably could get better if you really wanted to, that you don’t “look that sick” etc… will you be comfortable enough to risk rejection when you’re extra vulnerable at the holidays?

I know I wasn’t. The idea of reaching out to someone during a medical emergency only to have them chide me for interrupting their holidays was too much to bear. So I went through it alone.

Don’t get me wrong - the doctors and nurses were incredible. I think some of the kindest people volunteer to staff the ER at Christmas - as I’ve always found a caring person and a hand to hold during those difficult times.

Its not the same as having friends or family though.

That Christmas Eve - as I lay on a hospital gurney in terrible pain wondering if I would make it home to my bed by Christmas Day - I thought about how many of us spend the holidays alone. I thought about WHY people are so quick to forget us.

I reached out to others via social media. I expressed my sadness and disappointment and asked for support.

I got tons of heartfelt comments, messages of solidarity, cute GIFs and photos of cuddly animals.

I wasn’t alone anymore.

Something incredible happened. By asking for help and leveraging an online community of people who understood what I was going through - I found more love and support than I could ever imagine.

I even had a small Christmas miracle.

My posts were seen by someone within the theatre community which I was an active part of before becoming so sick.

This person left their Christmas party and came to the ER. They kept me company and gave me a ride home.

They came back the next day with a homemade meal

Suddenly I didn’t feel like a burden. I felt seen, valued and cherished. I felt wondrous amazement. I didn’t ask them to do it - they simply stepped up for someone in need.

Imagine if more people did that?

Their act of kindness coupled with the love and support I found online made that ER Christmas one of my most cherished memories - even in spite of all the pain and suffering.

I share this story to remind others than no one is ever truly alone

We may get let down a LOT … but we also rally together as a community more fiercely than most will ever know.

We share mutual aid, we hold zoom calls, we help keep each other fed and housed.

We show up.

My Chronic Illness Christmas article dives into feelings of loneliness, guilt and gaslighting that many of us deal with at the holidays.

It has tips for friends and family to help make it an inclusive and safe holiday.

I hope it also includes some hope and helps someone remember they’re not alone.

https://www.disabledginger.com/p/a-chronic-illness-christmas

#christmas #holidays #hospital #disability #ableism #kindness #randomactsofkindness
#chronicillness #longcovid #mecfs #disabilityrights

"It's a bit embarrassing to have been concerned with the human problem all one's life and find at the end that one has no more to offer by way of advice than
'Try to be a little kinder.'"
~Aldous Huxley

#Quote #Thought #Kindness #Literature

Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.

When you don’t - they abandon you.

People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.

When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.

I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.

The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.

It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.

Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”

That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.

These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.

This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.

Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.

All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.

I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.

I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.

Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.

We need allies we can count on to be there to support us. Who believe us.

My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.

Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.

Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.

#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #ableism #Eugenics #kindness #Community #Loneliness

We're blown away by the #support we've received from the #kindness of strangers already.

I've been advised to include some new tags, so here goes:

If you would please help me get my #fundraiser seen by someone who can help, we're trying to raise funds for my boy at https://gofund.me/dee4bbd4 #boostappreciated #mutualaid #MutualAidRequest #CatsOfMastodon