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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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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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dystobot · @dystobot
5 followers · 6308 posts · Server med-mastodon.com

#dystonia #neurological #InvisibleIllness

Last updated 2 years ago
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Invisiblyillin · @Invisiblyillin
207 followers · 889 posts · Server med-mastodon.com

Most people would say to just stay strong and leave it all behind. But I can’t. Literally, my tormentor is a part of me. If the NIH statements are correct, this monster is in my very cells. It’s Long Covid. And our relationship is far from exclusive. I’m sure, gentle reader, that you or someone you know will be sucked in and chained to this desperately unfair relationship too.

, , , , , , ,

#chronicillness #LongCovid #disability #InvisibleIllness #CovidIsNotOver #COVID #MaskUp

Last updated 2 years ago
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dystobot · @dystobot
5 followers · 3014 posts · Server med-mastodon.com

[Automatic repost twitter.com/dystobot/status/16]

RT @MommaJacy: I hope every retweets the original AP article and shares their stories, drop some truth bombs, en masses. @ the President and VP.
@POTUS @VP t.co/dx5jazg0Em

#cpp #chronicpainpatient #InvisibleIllness #migraine #complexhealthissues #rarediseases #mecfs #adhd #dystonia

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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dystobot · @dystobot
5 followers · 2114 posts · Server med-mastodon.com

#chronicillness #autoimmunedisease #InvisibleIllness #SLE #Sjogrens #fibromyalgia #lymedisease #crps #MultipleSclerosis #dystonia #Dysautonomia #chiari #depression #anxiety

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

2/

“Like Richard, many report trying to hide their symptoms by pushing themselves to work despite extreme pain and exhaustion as a means to avoid the negative judgment. As he puts it, he felt it necessary “to prove I was not a malingerer.’”


@spoonies @chronicillness

#InvisibleIllness #hiddenillnesses #chronicpain

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

7/

“I am being told that I am, “healthier than most patients,” but what they don’t see are my bad days. They don’t see what my body will succumb to after I get home from this visit.
I am beginning to distrust myself and question if my symptoms are real”

#InvisibleIllness #mecfs

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
532 followers · 694 posts · Server disabled.social

3/

"Long COVID patients often have their feelings invalidated not just by friends, loved ones, and extended family, but by health care providers. That can heighten feelings of isolation, particularly for people who live alone, says Jordan Anderson, DO, a neuropsychiatrist and assistant professor of psychiatry in the School of Medicine at Oregon Health & Science University in Portland"

@longcovid

#LongCovid #LongHaulers #PostCovid #InvisibleIllness

Last updated 2 years ago
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Autoimmune Community Institute · @Acicommunity
88 followers · 77 posts · Server disabled.social

In episode 1, Leea Sarvela introduces Dr. April Moreno, founder of the Autoimmune Community Institute, who shares the mission and vision and activites of the organization, as well as her own experience with an autoimmune diagnosis.
​​​​​​​​
acicommunity.org/podcast
​​​​​​​​

#bipoc #lgbtqia #autoimmune #undiagnosed #RareDisease #InvisibleIllness #podcast #autoimmunepodcast #diversityinautoimmune

Last updated 2 years ago
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Kim Clayden · @OnlinePsychotherapist
3 followers · 4 posts · Server disabled.social
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Today is the 💜

For folk like me with hidden disabilities, having options for accessing therapy is important.

So I offer:

🌟 Online therapy sessions with closed captions available.

🌟 Offering alternative ideas for positive activities low/non impact.

What do you do to be as inclusive as possible?

Kim
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#internationaldayofpersonswithdisabilities #chronicillness #eds #hypermobility #chronicpain #InvisibleIllness #disability #DisabilityAwareness #mentalhealth #onlinetherapist

Last updated 2 years ago
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