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Tom Kindlon · @tomkindlon
777 followers · 2038 posts · Server disabled.social

2/

"There are so many ways that an or can fluctuate, so many ways that the effects of such can change. But when you do have a or disability, it often comes with many of the same pitfalls of a . Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."


#illness #disability #fluctuatingillness #hiddendisability #chroniclife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicallyill #mecfs

Last updated 1 year ago
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Jeannette Ho · @Jeannho
192 followers · 3032 posts · Server glammr.us

"Hidden Barriers: The Experience of Academic Librarians and Archivists with Invisible Illnesses and/or Disabilities"

Interesting article in this month's issue of College & Research Libraries: crl.acrl.org/index.php/crl/art

#disability #hiddendisability #hiddenillness #invisibleillness #invisibledisability #librarians #diversity #archivists

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
701 followers · 1712 posts · Server disabled.social
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#parenting #parents #orthostaticintolerance #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #pots

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
533 followers · 708 posts · Server disabled.social
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"Judith Wilkinson’s M.E. led to dreams about the desert, which would later form the basis of her new collection of poetry"

Read one page on this on p31 here
actionforme.org.uk/uploads/pdf

Some poems can be read for free here
judithwilkinson.net/sample-poe

I haven't read it



#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

2/

Among other things, Myalgic Encephalomyelitis has left me too ill to date for the last 28 years.

My thoughts today are with those who, partly or fully due to chronic illness, are not in a relationship today.


@chronicillness @spoonies

#valentinesday #valentineswithnobody #valentinesday2023 #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #meeps #NEISvoid #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonie

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

4/

"As we meandered through this system, dazed and confused, the weeks have turned into months. We’ve now been on this hamster wheel for three years. Naturally, you feel like criminals — lawyers, experts, courts, procedures and appeals. You battle on knowing this has been designed to make you give up."





@chronicillness @chronicpain @spoonies

#NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

3/

"Rather than promoting learning and understanding of the nuances around chronic illness, the UWV packages all patients into a blob of the insoluble and leans prejudicially towards your illness being a temporary situation. One day you will get better"





#NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

2/

"Every day people enter the court to hear whether they can claim disability support and end up being punished for having a condition that is not easily diagnosed. And can’t be treated. It is not just those with ME/#CFS either, but lots of other associated chronic conditions — , , Chronic Disease, . We all run the same gauntlet"

@longcovid @spoonies @chronicillness @chronicpain

#pots #fibromyalgia #lyme #LongCovid #spoonielife #hiddenillness #InvisibleIllness #mecfs #fibro #myalgice #pwme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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🧵
Thoughtful & sympathetic blog post by 2 anthropologists on the Psychology Today website

psychologytoday.com/gb/blog/di

I'll post some extracts

"But, he explains, 'without a diagnosis, I wasn’t allowed to be sick—and so had to soldier on.'"

@spoonies @chronicillness
@longcovid
1/

#spoonie #mecfs #cfs #pwme #spoonies #hiddenillness #InvisibleIllness

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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"An Open Letter To Family and Friends About

People with other chronic illnesses that have a significant pain component (e.g. most people with ME/CFS) will likely be able to relate to this and so thus might like to share it also.

fibrotoday.com/an-open-letter-

@chronicillness @chronicpain @spoonies


#fibromyalgia #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #mecfs

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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"What My Loved Ones Need to Know About Life With " (2017)

themighty.com/topic/fibromyalg

Somebody with ME/#CFS could also written a similar letter

""I struggle each and every day, so please ease up on the expectations, accept that I cannot do some things, respect there are limitations and don’t take things personally."

@chronicillness @spoonies

#fibromyalgia #fibro #fms #fm #spoonielife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicillness

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

23/

“Communication is Key

Please don’t assume you know how I am feeling or what I can or cannot do. It changes constantly, and if we maintain a safe and open place to talk about what’s going on, we will better understand how to support one another through this. If you are unsure how to help, just ask”

#chronicillness #hiddenillness #chronicpain #invisibleillnesses #fibro #fms #mecfs

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

8/

“It is scary to not have the words to describe my symptoms in a way that others can understand. It is also scary when medical providers don’t know how to manage my symptoms because they aren’t sure how to find the cause of my illness.”

@chronicillness

#chronicillness #hiddenillness #pwme

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

2/

“It is hard to know how to support others when their health becomes compromised. It can leave you feeling powerless and unsure of what to do. It is even harder when your loved one is afflicted by an “invisible illness.” One where there isn’t a cast around their arm, or a blood test to reveal exactly what “it” is”

#InvisibleIllness #invisibleillnesses #hiddenillness #hiddenillnesses

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
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🧵
I thought this was very good:

"Insights into My Chronic Illness" (2021)

"Written from the perspective of an individual with chronic illness to a , friend, spouse, etc. This letter provides insight into the patient experience & how you can support them"

batemanhornecenter.org/wp-cont

Extracts to follow

@chronicillness @mecfs @longcovid

1/

#caregiver #caring #caregiving #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicallyill #cfs

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
276 followers · 70 posts · Server disabled.social

2/

"Don’t let their doubt make you doubt yourself. Your medical problems may trigger their own fears about illness & mortality, or they may be so caught up in struggles of their own that they’re not able to see their way clear to empathize with you”

@chronicillness @mecfs

#hiddenillness #pwme #chronicillness #spoonie #mecfs

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
254 followers · 55 posts · Server disabled.social
ABC News - People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects

"People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects" (29 Nov)

abc.net.au/news/2022-11-30/inv

"Others with invisible disabilities have told me stories of times they've chosen not to seek help for symptoms like debilitating pain after feeling dismissed the last time they sought support."


#idpwd2022 #internationaldayofpersonswithdisabilities #idpwd #iddp2022 #invisibledisability #hiddenillness #InvisibleIllness #spoonie #invisibledisabilities

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
166 followers · 16 posts · Server disabled.social
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Somebody shared the following previously saying:
"I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much"

Here's the TikTok link: tiktok.com/@jeremyandrewdavis/




Re-post as deleted original in error

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #NeuroME #millionsmissing #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
161 followers · 14 posts · Server disabled.social
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Somebody shared the following previousl saying:

"I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much"

Here's the TikTok link: tiktok.com/@jeremyandrewdavis/


#spoonie #ELCI #spoonielife #chronicillness #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #me #mye #meeps #cfsme #cfids #seid #NeuroME #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies

Last updated 2 years ago
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Michonne · @MichonneCherharazard
1 followers · 67 posts · Server mastodon.social
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Life when your too ugly to be sick
Too
to be accepted as a Real
And too

To be the
The irony

If I Had a good man in my life how great would my day be

#disability #hiddenillness #british #fragile #strongblackwoman

Last updated 2 years ago
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