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Reposted by Cancer Cushion

Tom Kindlon @tomkindlon.bsky.social · 23d

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD"

From:
When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine

www.ochsnerjournal.org/content/25/3...

#invisibleillness #LongCovid #chronicillness
#hiddenillness #ChronicIllnesses

Table 2. Never-WordsforPatientsWithInvisibleIllnesses– Liza Di LeoThomas,MD Di Leo Thomas, L Never-WordPhrase Alternative Explanation “But you look fine.” “At least you don’t look sick.” “Great news! All your tests are negative!” “You can’t believe everything you see online. Let’s not diagnose you based on a TikTok influencer.” “At least you’re not bedbound, wheelchair bound, don’t have cancer, et cetera, et cetera, et cetera….” “Wedon’t knowmuchaboutthisillness. There’s nothing I can do for you.” “It must be frustrating to feel so awful.” “The goodnewsiswehaveruledout (A, B, C) by doing these tests. But I believe there is something wrong, and I will work with you to figure it out.” “Thank you for taking such an interest in your illness and advocating for yourself. Let’s talk about what you saw online.” “It sounds like you are suffering with this quite a bit. Can you explain how it has affected your quality of life?” “I realize the research on Long COVID is slow to come, andIcan’t imagine how frustrating that is for you. Let’s see whatwecandorightnowtotreat someofyoursymptomsandimprove your quality of life.” Telling patients they look fine may make themfeel like you are doubting their illness, even if you are not. Somepatients maynotfeel like it is great newsthat test after test is negative whentheyknowsomethingis absolutely wrong with them. Online communities have become ahuge source of support for patients with LongCOVIDandotherinvisible illnesses. Hearing someone else describe the same symptomscanbe incredibly validating. Avoid dismissing these sources outright. Avoid starting with “at least,”which can sound dismissive or invalidating. Instead, explore how the illness impacts the patient’s life. Even without definitive treatments, providers can offer symptom managementandhope. Acknowledging the patient’s frustration while focusing on what can bedoneisempowering.

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Cancer Cushion @cancercushion.bsky.social · May 17

Grateful to have been featured on one of my favorite podcasts this week!

#ChildhoodCancer #HelpAndHopeHappenHere

open.spotify.com/episode/3Fbo...

Dr.Allie Neenan is the Founder and Director of the very comprehensive Resource Library called CANCER CUSHION and will talk about the many specific facets of the Pediatric Cancer Experience

Help and Hope Happen Here · Episode

open.spotify.com

Cancer Cushion @cancercushion.bsky.social · Apr 13

I would love to be added!

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Cancer Cushion @cancercushion.bsky.social · Apr 1

A reminder for #AYA cancer awareness week that young cancer patients are disproportionately affected by cuts to Medicaid and clinical trial funding.

www.nbcwashington.com/news/local/m...

Mom with stage 4 cancer approved for clinical trial after NIH funding cuts left her in limbo

Brooke Kajdy, who lives in Canada, was pregnant with her son when she was diagnosed with stage 4 B-cell lymphoma.

www.nbcwashington.com

Cancer Cushion @cancercushion.bsky.social · Mar 28

I wholeheartedly reject the capitulation from APA on DEI. Anti-racism is not "illegal discrimination" and every day that we let that lie grow is putting people's lives at risk.

#APA #AmericanPsychologicalAssociation

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Calvin Lai @calvinklai.bsky.social · Mar 28

Extremely disappointing & cowardly. The American Psychological Association is rescinding diversity requirements. Not due to any actual mandate from the federal government, but only because it may *someday* face pressure from the government www.nytimes.com/2025/03/27/h...

Under Pressure, Psychology Accreditation Board Suspends Diversity Standards

As the Trump administration threatens to strip accrediting bodies of their power, many are scrambling to purge diversity requirements.

www.nytimes.com

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Madhu Pai, MD, PhD @madhupai.bsky.social · Mar 28

The speed at which American universities & companies are giving up on DEI is a dead giveaway that they were never serious to begin with

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Cancer Cushion @cancercushion.bsky.social · Mar 28

I stand with my colleagues who have dedicated their careers to research and are now questioning their futures due to #NIH funding cuts.

Use #ThanksToNIH to show your support for research that matters to you.

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JenniD💙💪🇺🇦🏳️‍🌈🫘 @truthistheword.bsky.social · Mar 27

We need to acknowledge that her community (2000+) did stand up in less than 24 hours. We need to support her and the others and stand up too! Please celebrate and praise the shit out of these communities that stand together.
www.tuftsdaily.com/article/2025...

Over 2000 protest in wake of student detainment - The Tufts Daily

Students and local activists gathered on Wednesday evening at Powder House Park to protest the detainment of Tufts graduate student, Rumeysa Ozturk, by federal authorities on Tuesday. The protest...

www.tuftsdaily.com

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Jeremy Berg @jeremymberg.bsky.social · Mar 27

Ruining studies and potentially harming research subjects...

Abruptly terminating clinical trials...

Ignorant and evil

www.theatlantic.com/health/archi...

The NIH’s Most Reckless Cuts Yet

Ending clinical trials with no warning can put patients at risk.

www.theatlantic.com

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Rachael Sirianni, PhD @docsirianni.bsky.social · Mar 28

Thanks @lynnjolicoeur.bsky.social for the in depth discussion + raising attention to these issues! Attacks on NIH are attacks on the future of medicine and technology in our country. Spending freezes, hiring freezes, delayed funding, lost funding opps, fewer trainees— the damage is real + growing

Lynn Jolicoeur @lynnjolicoeur.bsky.social · Mar 28

Hear our interview with @docsirianni.bsky.social of @umasschan.bsky.social on why she shut down some of her lab's research. She says federal cuts are "destroying" what's made the U.S. a global leader in science, medicine and tech, "without any rhyme or reason or logic."
www.wbur.org/news/2025/03...

UMass biomedical scientist freezes pediatric brain cancer research due to federal funding problems

UMass Chan Medical School biomedical engineer and professor Rachael Sirianni leads a lab that researches new technologies to help treat brain tumors in children. Delays in federal grants have led her ...

www.wbur.org

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Cancer Cushion @cancercushion.bsky.social · Mar 25

Health disparities in #cancer care are well documented. Terminating grants to address them is reprehensible. I stand with all who are affected by recent #NIH cuts.

Cancer Cushion @cancercushion.bsky.social · Mar 22

#AYACancer has profound and unique impacts on the mental health of teens and young adults. Learn more about how to support them at CancerCushion.com/TeenAYA

Cancer Cushion @cancercushion.bsky.social · Mar 18

Parents are profoundly impacted by a child's cancer diagnosis. Learn more about how to manage your own mental health after a #childhoodcancer diagnosis at CancerCushion.com/Parents 🎗️

Cancer Cushion @cancercushion.bsky.social · Mar 11

Siblings of children with cancer have their own unique and difficult experiences. Learn more about ways to help #childhoodcancer #supersibs at CancerCushion.com/Siblings 🎗️

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Cancer Cushion @cancercushion.bsky.social · Mar 10

Grief is a lifelong journey, with many emotions that come and go across time. You can learn more about how to support loved ones through grief at CancerCushion.com/Grief 🎗️

Cancer Cushion @cancercushion.bsky.social · Mar 8

Some burdens are just too heavy to carry alone. Know that there is always power in community, especially the childhood cancer community. What we carry together gets lighter 🎗️

Cancer Cushion @cancercushion.bsky.social · Mar 6

In over 10 years of being involved with the childhood cancer community, never have I seen it come under attack like this. To all the families out there fighting the good fight, know that you're not alone. #fightlikeakid

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Cancer Cushion @cancercushion.bsky.social · Mar 5

1 in 260 children is diagnosed with cancer. That leaves 259 of us to help. Learn more at cancercushion.com/familysupportguide