2/
"There are so many ways that an #illness or #disability can fluctuate, so many ways that the effects of such can change. But when you do have a #fluctuatingillness or disability, it often comes with many of the same pitfalls of a #hiddendisability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."
#chroniclife #hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll #MEcfs
#illness #disability #fluctuatingillness #hiddendisability #chroniclife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicallyill #mecfs
Book I just came across: "Horizontal #Parenting: How to Entertain Your Kid While Lying Down"
Could be useful for #parents with conditions causing #orthostaticintolerance (intolerance to being upright)
Some reviews
https://www.mamasfacingforward.com/2022/12/03/book-review-horizontal-parenting-how-to-entertain-your-kid-while-lying-down/
https://www.amazon.co.uk/Horizontal-Parenting-Entertain-While-Lying/dp/179721134X
@mecfs @spoonies @parenting #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #chronicillness
#chroniclife #Spoonielife
#hiddenillness #invisibleillness #pots @pots @chronicillness
#parenting #parents #orthostaticintolerance #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #pots
[Automatic repost https://twitter.com/dystobot/status/1652826452545372160]
RT @divadisabled1: #dystonia
#neurological
#invisibleillness https://t.co/Aq4hANhQkY
#dystonia #neurological #InvisibleIllness
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, #disability, #InvisibleIllness, #CovidIsNotOver, #Covid, #MaskUp
#chronicillness #LongCovid #disability #InvisibleIllness #CovidIsNotOver #COVID #MaskUp
[Automatic repost https://twitter.com/dystobot/status/1629532972163448833]
RT @MommaJacy: I hope every #CPP retweets the original AP article and shares their stories, drop some truth bombs, en masses. @ the President and VP.
@POTUS @VP #ChronicPainPatient #InvisibleIllness #Migraine #ComplexHealthIssues #RareDiseases #MECFS #ADHD #Dystonia https://t.co/dx5jazg0Em
#cpp #chronicpainpatient #InvisibleIllness #migraine #complexhealthissues #rarediseases #mecfs #adhd #dystonia
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.
#ValentinesDay
#ValentinesWithNobody #ValentinesDay2023 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps #neisvoid #chronicillness #chroniclife @chronicillness #Spoonielife #hiddenillness #invisibleillness #ChronicIllnesses @spoonies #Spoonie
#valentinesday #valentineswithnobody #valentinesday2023 #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #meeps #NEISvoid #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonie
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."
#neisvoid #chronicillness
#chroniclife #ChronicPain
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll @chronicillness @chronicpain @spoonies
#NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill
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
#NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill
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 — #POTS, #Fibromyalgia, Chronic #Lyme Disease, #LongCovid. We all run the same gauntlet"
@longcovid @spoonies @chronicillness @chronicpain #Spoonielife #hiddenillness
#invisibleillness #MEcfs #Fibro #MyalgicE #PwME
#pots #fibromyalgia #lyme #LongCovid #spoonielife #hiddenillness #InvisibleIllness #mecfs #fibro #myalgice #pwme
[Automatic repost https://twitter.com/dystobot/status/1621535289389858818]
RT @LunaRivera96: Not very part of living with a chronic illness is visible!
#chronicillness #autoimmunedisease #invisibleillness #SLE #sjogrens #Fibromyalgia #lymedisease #CRPS #MultipleSclerosis #Dystonia #Dysautonomia #Chiari #depression #anxiety https://t.co/fTKGEcN2ov
#chronicillness #autoimmunedisease #InvisibleIllness #SLE #Sjogrens #fibromyalgia #lymedisease #crps #MultipleSclerosis #dystonia #Dysautonomia #chiari #depression #anxiety
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.’”
#invisibleillness #hiddenillnesses #chronicpain
@spoonies @chronicillness
#InvisibleIllness #hiddenillnesses #chronicpain
🧵
Thoughtful & sympathetic blog post by 2 anthropologists on the Psychology Today website
I'll post some extracts
"But, he explains, 'without a diagnosis, I wasn’t allowed to be sick—and so had to soldier on.'"
#Spoonie #MEcfs #CFS #PwME #Spoonies @spoonies @chronicillness #hiddenillness
#invisibleillness @longcovid
1/
#spoonie #mecfs #cfs #pwme #spoonies #hiddenillness #InvisibleIllness
"An Open Letter To Family and Friends About #fibromyalgia
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.
https://www.fibrotoday.com/an-open-letter-to-family-and-friends-about-fibromyalgia/
@chronicillness @chronicpain @spoonies #chronicillness #chroniclife
#ChronicPain #Spoonielife
#hiddenillness #invisibleillness
#MEcfs
#fibromyalgia #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #mecfs
"What My Loved Ones Need to Know About Life With #Fibromyalgia" (2017)
https://themighty.com/topic/fibromyalgia/letter-to-loved-ones-about-life-with-fibromyalgia/
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."
#Fibro #FMS #FM @chronicillness @spoonies #Spoonielife #hiddenillness #invisibleillness #Spoonies #Spoonie #chronicillness
#fibromyalgia #fibro #fms #fm #spoonielife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicillness
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”
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
#InvisibleIllness #invisibleillnesses #hiddenillness #hiddenillnesses
🧵
I thought this was very good:
"Insights into My Chronic Illness" (2021)
"Written from the perspective of an individual with chronic illness to a #caregiver, friend, spouse, etc. This letter provides insight into the patient experience & how you can support them"
Extracts to follow
@chronicillness @mecfs @longcovid
#Caring #Caregiving #chronicillness #chroniclife #ChronicPain #Spoonielife #hiddenillness #invisibleillness
#Spoonies #Spoonie #ChronicallyIll #CFS
1/
#caregiver #caring #caregiving #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicallyill #cfs
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
#LongCovid #LongHaulers #PostCovid #InvisibleIllness
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.
https://acicommunity.org/podcast
#BIPOC #LGBTQIA #Autoimmune #Undiagnosed #RareDisease #InvisibleIllness #Podcast #AutoimmunePodcast #DiversityInAutoimmune
#bipoc #lgbtqia #autoimmune #undiagnosed #RareDisease #InvisibleIllness #podcast #autoimmunepodcast #diversityinautoimmune
Today is the #InternationalDayOfPersonsWithDisabilities 💜
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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#chronicillness #EDS #Hypermobility #chronicpain #invisibleillness #disability #disabilityawareness #MentalHealth #OnlineTherapist
#internationaldayofpersonswithdisabilities #chronicillness #eds #hypermobility #chronicpain #InvisibleIllness #disability #DisabilityAwareness #mentalhealth #onlinetherapist