A Chronic Voice
@AChVoice
Followers
18,357
Following
14,446
Media
8,832
Statuses
67,126
I share #ChronicIllness & #ChronicPain info fr VARIOUS #perspectives . #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy #MentalHealth #anxiety #depression
Singapore
Joined November 2015
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Pinned Tweet
"My aim with this site is to raise
#awareness
about lifelong
#illnesses
from various
#perspectives
" - I've updated my
#AboutPage
to provide more information and resources. Check it out here!
#MondayBlogs
108
530
849
[New Post] "
#Pain
is a deep, dark pit that co-exists with the poisonous snakes of severe
#depression
,
#anxiety
, and yet more pain. There can always be more pain, and there can always be different kinds of pain.":
#ChronicPain
#ChronicLife
64
61
128
[New Post] "The tricky thing about
#chronicIllnesses
are how individualistic they are. Even people suffering from the same
#illness
can present vastly different symptoms, and use opposite strategies to cope":
#spoonie
#ChronicLife
#InvisibleIllness
57
70
128
Which part of living with chronic illness - unrelated to the the pain itself - gets you down the most?
Hard to make new friends
107
Societal expectations
340
Can’t keep a job
223
Other (please share!)
151
104
84
117
"I feel isolated all the time so when someone reaches out to me just to catch up, check in, or say hi, it can quite literally make my day":
#friends
#isolation
#mentalhealth
#chronicillness
#spoonieproblems
32
53
95
[New Post] With
#ValentinesDay
Coming Up, I'd Like to Take Some Time to Honour the
#Relationship
I Have with My
#Body
- it's the most
#intimate
one I'll ever have:
#chronicblogs
37
36
90
[New Post]
#GuestPost
by a Friend Who Also Suffers from
#ChronicPain
- "We had all managed to conceal our conditions so well, that we couldn’t even identify ourselves amongst other
#spoonies
!":
#chronicblogs
#chronicillness
45
40
81
[New Post] "Often the best thing a person can do is to acknowledge that it’s impossible to comprehend, but validate the existence of the pain":
#mondayBlogs
#chronicIllness
#caregivers
#beKind
#spoonie
26
41
77
[New Post] I’m excited to publish this little
#ebook
of mine, it only took two years 😉
#spoonie
#chronicillness
#chronicblogs
#freebie
40
34
77
"If I can nip pain in the bud, it saves me fr a bigger
#painflare
, where I would need
#steroids
instead to control it. That solution isn’t any better, as steroids come w its own set of nasty & sometimes permanent
#sideeffects
":
#ChronicIllness
#medications
13
20
74
[Updated Post] "If someone is making
#ignorant
remarks, remember that you have limited spoons and this is not worth your health or anger. Spend it on creating good
#memories
instead":
#spoonie
#chroniclife
#TwitterTuesday
21
34
75
“At one point, she could only film one day a month. From her bed, she started reaching out to other patients on online message boards to interview them”:
@WSJ
@jenbrea
#MECFS
#chronicfatigue
#spoonie
#chronicillness
#film
0
29
74
[New Post] “
@jenbrea
was a Ph.D. student at Harvard, when she was struck down by a mysterious illness. This is a
#documentary
...living with this nightmare of a disease called
#MECFS
”:
@unrestfilm
#chronicillness
#chronicpain
#society
22
36
74
[New Post] What It's Like to Live with Pain Day in & Out, and the Things That Make Life
#WorthIt
:
#chroniclife
#spoonie
#chronicillness
#chronicpain
25
37
72
As a
#disabled
or
#chronicallyill
person, what do you think gives you the most
#independence
? Do share your knowledge with me and others! :)
#disability
#chronicillness
Mobility Aid (Which?)
116
Digital Tools (Which?)
51
Pain Meds
244
Others (Please Share!)
63
74
64
69
[New Post] “If you’re
#suffering
so much, then shouldn’t it be 100%
#effort
counted on your part, too?”:
#spoonie
#chronicillness
#chroniclife
18
21
60
"There were a few recurring themes: The
#loss
of
#friendships
. The
#ignorance
or lack of understanding from friends, family &
#society
.
#Isolation
and loss of a social life. Loss of independence and career. The unpredictability":
27
33
65
9
21
66
[New Post] "Thinking about it, slowing down requires more discipline than speeding up. The latter can be motivated by fear, but the former requires a constant, conscious choice":
#selfcare
#chronicillness
#slowdown
#juneprompts
#amblogging
19
19
65
[Updated Post] "I feel nothing. I feel weight. The weight of nothing bearing down on my chest, crushing against my lungs.
#Breathing
requires conscious effort, as my
#body
has forgotten its natural rhythm":
#MentalHealth
#spoonie
#InvisibleIllness
20
22
63
[Archives] "Travelling with
#chronicillnesses
can be a tricky & worrisome endeavour...I will list down the most important things I do to ensure a smooth and enjoyable trip":
#invisibleillness
#spoonie
#mentalhealth
#travelguide
22
26
64
“I'm no longer hiding my
#disabilities
, because people need to be aware that
#youngpeople
get sick too and it's okay. Disabilities need to be normalized, not hidden in the dark”:
#society
#disability
#invisibleillness
7
29
59
"I am made to feel
#guilty
abt my
#chronicillness
that I have no control over. How come it’s not enough for me to express my pain & sickness? Why does everyone need proof? Are my words & cries for help not enough?":
#spoonie
#chronicpain
#invisibleillness
2
32
60
“I think
#fatigue
is harder for
#healthy
people to understand than
#pain
because everyone has felt pain at some point in their lives..can’t wrap their heads around what it feels like to be exhausted even after 12 hours of sleep":
#ChronicFatigue
#spoonies
8
36
59
[Archives] "In modern
#society
,
#sleep
is often considered a luxury more than a necessity, but your brain isn’t loafing when you rest...your body undergoes maintenance and repair":
#selfcare
#chronicblogs
#chronicpain
20
27
63
“Even when the pain is excruciating, I always say my pain is at a nine on the pain scale. I’m saving my ten for when I really need it, or I pass out”:
@lindsayglenne
#ChronicPain
#SpoonieProblems
#ChronicIllness
#fibromyalgia
#healthcare
8
16
63
"
#SelfAwareness
is about knowing our own needs, strengths and weaknesses. When we understand ourselves better, we can use strategies with more precision to deal with our good and bad days":
#ChronicIllness
#ChronicPain
#spoonies
#MentalHealth
16
25
59
Goodnight Archer. You were a curious and cheeky little brat that brought us so much joy. We are going to
#missyou
so much. ❤️ (Pictures are from him as a baby, up until he had a mate❤️):
#bluemonster
#parrotlet
#cutenessoverload
#spoonie
13
5
56
[New Post] "'What is the
#purpose
of my life?'...It is a thought that can be disturbing to me especially when I’m in the throes of extreme pain":
#chronicpain
#lifelessons
#chronicblogs
#selfawareness
25
23
56
"With all our advances in
#medicine
and
#technology
, it’s easy to presume that there’s always a
#solution
. But
#chronicIllness
has no answer, it is always lurking somewhere, even while in
#remission
":
#ChronicLife
19
28
55
"I allow myself to rest and retreat, and surround myself with comforting and supportive resources. These all help me to regenerate even better":
#resilience
#SelfCare
#ChronicIllness
#ChronicPain
#PainRelief
7
16
54
“I try my best to be
#positive
, I’m a born
#optimist
. But sometimes I don’t have the energy or will to look on the bright side. I’ve had to fight so hard in my life and it’s bloody exhausting”:
@JourneyFog
#ChronicLife
#InvisibleIllness
#MentalHealth
10
23
56
9
27
55
"I think that many of us who live with
#chronicillnesses
often feel like private investigators or scientists...We experiment with
#treatments
, supplements, machines, or anything that might bring
#painrelief
":
#linkup
#ChronicPain
19
20
51
“My pain is my own, not yours to comment on. To doubt. To judge. I have to cope with it. Live with it. Endure it. How I do so, is my choice...
#GoodDays
.
#BadDays
. It is a mix”:
@Nikki_Albert
#awareness
#ChronicPain
#InvisibleIllness
5
19
54
Had a full blown
#seizure
in my sleep last night. Didn’t know until my partner told me so. Today is an irregular one filled with brain confusion,
#headaches
, & all that. But here’s my loyal companion who checks in on me :)
#cockatiel
#tonicclonic
#spoonie
23
6
52
[New Post] "Life is large, everchanging, and tethers itself to no one
#society
, thought or
#perspective
. It encompasses all ways of living":
#spoonies
#chroniclife
#selfawawreness
18
20
53
"
#Netflix
is launching a series called 'Afflicted' about 7 people with
#chronicillnesses
searching for answers to their 'baffling' symptoms as they encounter dismissal & hostility from the
#medical
establishment":
@MEActNet
#society
#documentary
3
21
54
“I’m
#bored
! Bored of these four walls, bored of pain..bored of being sensible and pacing myself, bored of my own company..bored of not living..I have had enough of this crash now”:
@JourneyFog
#SpoonieProblems
#MentalHealth
#ChronicIllness
#pwME
11
20
55
[New Post] "I have always been an optimistic & positive person. Yet when I became sick, these
#negative
thoughts drained & distracted me, when opportunities for
#gratitude
and
#joy
were still very much alive in my life":
@lisaalioto
#selfidentity
#spoonie
19
17
53
“I remained polite at first, but after 5 separate
#cure
#suggestions
for depression,
#fibromyalgia
pain, acid reflux from the same person, in the space of 20 minutes, I felt compelled to confront them. This is not ok”:
@JourneyFog
#ChronicIllness
#Health
5
19
53
“I can’t regulate my
#bodytemperature
, so when the sun begins to shine I’m often filled with more dread than happiness”:
#HotWeather
#ChronicPain
#ChronicLife
#SelfCare
10
21
53
“They assume I lack the
#motivation
to just ‘push through’ the pain and exhaustion. The truth is; I have all the motivation in the world, but I live in a body that is not able":
@JourneyFog
#ChronicPain
#WritingPrompts
#spoonie
#ChronicFatigue
2
17
50
“I'm no longer hiding my
#disabilities
, because people need to be aware that
#youngpeople
get sick, too and it's okay. Disabilities need to be normalized, not hidden in the dark”:
#invisibleillness
#society
#awareness
4
20
45
"I allow myself to rest and retreat, and surround myself with comforting and supportive resources. These all help me to regenerate even better":
#SelfCare
#PainManagement
#ChronicLife
#spoonies
#MentalHealth
14
23
47
“I can’t count the number of hours I’ve spent in researching
#Fibromyalgia
..The time I’ve spent learning has greatly helped me take more control over my
#wellnessjourney
":
@klclark525
#ChronicIllness
#ChronicPain
#spoonie
1
10
50
“Getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem. Getting more
#sleep
at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!)”:
@TheMightySite
#chronicillness
#chronicfatigue
#mecfs
#tired
1
22
49
“That’s what people go thru when they hv
#chronicpain
. How do I know if my
#pain
is something different, or jz a normal part of my disorder? I don’t want to waste any
#doctor
’s time—or mine—if I’m just having a flare”:
@lindsayglenne
#PainFlares
#spoonies
2
19
49
"Studies have shown that
#female
and
#BIPOC
#patients
are more likely to be dismissed by
#medical
professionals, receive poorer treatment, and be undertreated for serious
#healthconditions
":
@anideallifeblog
#ableism
1
23
49
[New Post] "It’s difficult to put yourself in their shoes, and I wouldn’t expect that of anyone. But showing some
#empathy
is possible, and providing a
#listeningear
is always appreciated":
#guestpost
#spoonie
#chronicillness
18
28
48
“Are they questioning the
#validity
of my illness? Are they challenging me to prove how ill I am? Are they accusing me of faking it? Or are they just simply making an honest observation?”:
@JourneyFog
#invisibleillness
#spoonie
#chronicpain
#mentalhealth
2
18
47
Small thought I have about the
#DoctorsAreDickheads
hashtag (I haven’t been following closely so may be wrong!). But I keep thinking about those
#doctors
who DO speak up for
#patients
, save lives & treat them well. We can’t just lump ‘doctors’ into 1 boat.
6
8
48
Little love letters and guideposts for those days when it gets a little too dark ♥️ Click to read the post:
#reminders
#ChronicIllness
#depression
#ChronicPain
#MondayBlogs
5
21
47
[Archives] "Sometimes you feel awful for no good reason or perhaps you have just received some
#badnews
, and you know what? Yes, you’re allowed to feel upset about it":
#depression
#chronicpain
#spoonie
#selfawareness
23
23
49
"
#Chronicillness
or
#disabled
#patients
who may be considering
#suicide
are not doing so because they are weak. We have been fighting for a long time..that can take a toll on anyone..It would be nice if we..lived in a more compassionate..
#society
":
2
11
47
“When you start expecting to wake up with the pain every day. That’s terrible. When you don’t even notice anymore, and when it becomes your normal. That’s heartbreaking”:
@TheMightySite
#ChronicPain
#ChronicIllness
#spoonies
#depression
#BeKind
1
24
47
"If I was to use a
#wheelchair
, then all of a sudden this becomes a possibility for me. But, according to
#society
, I can walk, so I shouldn’t have to use one":
@TheMightySite
#disability
#awareness
#invisibleillness
6
13
47
[New Post] "
#SelfAwareness
is about knowing our own needs,
#strengths
and
#weaknesses
. When we understand ourselves better, we can use strategies with more precision to deal with our good and bad days":
#MondayBlogs
#ChronicLife
23
34
44
"It’s a timeless, eternal question that has plagued or intrigued
#humanity
since the beginning of time. It is a thought that can be disturbing to me especially when I’m in the throes of extreme pain":
#ChronicPain
#MeaningOfLife
#perspectives
#ChronicLife
3
7
47
“Pain tolerance is how much
#pain
you can handle while still functioning (for me, this means how much pain I can handle w/o taking
#meds
). Pain threshold is when yr body actually starts to feel pain”:
@TheMightySite
#chronicpain
#invisibleillness
#spoonie
1
24
44
"Turns out that many of us want to try the same thing, no matter where we are in the world!" - Wouldn't some time off from
#pain
be one of the best
#Christmasgifts
of all?
#ChronicPain
#WishList
#spoonies
0
8
47
"Whilst I did not ask others with
#chronicillness
or
#disability
how they feel about this, I know that many of us share the same sentiments. It feels like
#suicide
is always an option on the table":
#ChronicPain
#MondayBlogs
10
6
48
“One of the hardest parts of living with an illness is the
#emotional
toll it takes when people don’t believe you’re sick”:
@chronicmom1
#spoonie
#chronicillness
#mentalhealth
#disbelief
2
21
46
"It’s a
#lifelesson
many of us with chronic illnesses have had to learn early the hard way, as living with
#chronicillness
is basically living with unpredictability as a constant companion":
#maybes
#InvisibleIllness
#SelfAwareness
2
18
46
"It’s terrifying when yr physical
#appearance
morphs because of
#medication
or
#illness
. Looking at yourself in the mirror becomes a
#traumatic
experience. It’s deflating& scary when u experience strange
#symptoms
, 1s that even yr doc has no answer for":
0
9
46
"In fact, the only thing that has really made a difference to me is a concept called
#pacing
...That means staying within my '
#energy
envelope'..Which changes. All the time)":
@dSavannahCreate
#ChronicLife
#PainManagement
#spoonie
4
16
44
"You don’t always have to wait for someone to ask for help; often when they do, it’s because they’re already at their wits’ end":
#chronicpain
#spoonieproblems
#chronicillness
#support
#caregivers
7
15
43
"If u truly care about someone who lives in permanent pain or a
#disability
, then listen to them beyond the surface. Don’t hush them for being ‘morbid’ or silly, or because it makes you – not them – feel uncomfortable":
#ChronicPain
#MondayBlogs
#spoonies
0
18
44
"You may feel like you lose your
#independence
, your
#selfworth
, your ability to be a role model, your income, the ability to give your kids a good Christmas, and care for yourself":
@TheMightySite
#chronicillness
#chroniclife
#career
2
15
43
"Should someone go out of their way to make us feel uncomfortable, perhaps we can turn the tables, and take it as an opportune moment for
#education
":
#humanity
#opportunity
#advocate
#advocacy
0
4
44
“They assume I lack the
#motivation
to just ‘push through’ the pain and
#exhaustion
. The truth is; I have all the motivation in the world, but I live in a body that is not able":
@JourneyFog
#ChronicIllness
#InvisibleIllness
#spoonies
3
14
42
There’s plenty of colour and life and beauty yet left in you :)
#qotd
#selfawareness
#spoonie
#chronicillness
#believe
3
10
44
[New Post] "
#Pain
is a harsh teacher. It humbles you. It dunks your head into a pool of piss & forces you to ponder
#life
’s big questions as you drown. Then it pulls you up for a breath of air, before repeating the process":
#prompts
#ego
#chronicillness
19
26
42
"I am also glad that I actually don’t look
#sick
, despite this being the bane of
#invisibleillnesses
...I cannot imagine how I would look like if my internal problems were all manifested upon my physical form":
#mentalhealth
#depression
#spoonie
14
16
42
"turns out spoon
#tattoos
r popular for a specific reason:
#SpoonTheory
": (via
@qz
)
#spoonie
#chronicillness
0
4
32
[Updated Post] "
#Chronicillness
is a monster consumer of
#energy
, leaving little to spare. Why waste it on unnecessary
#thoughts
and unchangeable circumstances":
#twittertuesday
#inspirationalquotes
#spoonie
16
22
41
“
@BlueBadgeCo
has a new range of Window
#CarStickers
that let your voice be heard, without saying a word! Avoid confrontation and stress”:
#SayItWithASticker
@niamhgabriellex
#awareness
#disabled
#InvisibleIllness
3
10
40
[New Post] "In part 1 everyone shared what their biggest
#triggers
are, and in part 2 their best tips for prevention...But what happens if you land right smack in the middle of that dreaded flare anyway?":
#flareups
#spoonies
#chronicpain
#mondayblogs
22
36
43
"Everyone with a
#chronicillness
has their own special
#painrelief
toolkit. We all use different things to relieve pain, as not everything works the same for us all":
#ChronicPain
#PainManagement
#MondayBlogs
6
16
38
"Contrary to what most would believe, my surgical
#anxiety
is not a
#fear
of death. Going under, I am not afraid I will die. I fear of waking in a worse state than before":
@hospitalprncss
#surgery
#spoonie
#ChronicIllness
6
7
38
"It touches on a bit of everything that goes on in the
#hospital
. The frenzy in the emergency room, the intenseness of a surgery, the high-stress & heartbreaks in the NICU, stolen drugs by
#doctors
, interactions with
#patients
...":
#nurse
#MondayBlogs
5
14
41
“The general rule of
#socialmedia
is to share 80% content from other sites, and 20% of the time share your own content”:
@ChronicBlogs
#bloggingtips
#spoonieblogger
#chroniclife
#amblogging
0
7
19
"When I have to stop, I stop. If I need to lay down, I lay down. I decided long ago to not try to prove anything to anyone or any
#flareup
. It is a setup for
#misery
":
#chronicpain
#spoonie
#invisibleillness
4
14
42
“I am flabbergasted that these studies seem to find this link weird. How long do you think one can have
#chronicpain
without
#psychological
consequences?”:
@Nikki_Albert
#MedicalResearch
#ChronicIllness
#MentalHealth
2
10
42
“
#Gaslighting
is an extremely effective form of
#emotionalabuse
that causes a
#victim
to question their own feelings, instincts and sanity, which gives the abusive partner a lot of power”:
@JourneyFog
#society
#PatientCare
3
23
42
[New Post] I don't know abt u, but for me there's a diff btwn saying '
#staypositive
' vs '
#thinkpositive
':
#spoonie
11
16
37
“1 of my major
#fears
for even starting a med like
#Cymbalta
were all the stories of
#withdrawal
symptoms. 1 friend told me abt her mom's experience after taking it for 2 yrs that ended up being so bad..gave up & went back on it”:
#duloxetine
#fibromyalgia
15
10
37
“
#Acceptance
is a powerful thing. It enables you to let go of what is holding you back, to focus on what you can do now rather than what you can’t do”:
@JourneyFog
#SelfAwareness
#MentalHealth
#ChronicPain
#Spoonies
4
16
40
[New Post] Photo
#Evidence
of
#InvisibleIllness
- because there are always clues left behind:
#spoonieproblems
28
23
40
“My
#pain
is my own, not yours to comment on. To doubt. To judge. I have to cope with it. Live with it. Endure it. How I do so, is my choice...Good days. Bad days. It is a mix”:
@Nikki_Albert
#ChronicIllness
#ChronicLife
#empathy
#spoonies
2
19
40
Hehe so true. Even perfection can be distorted with
#negativity
:
#qotd
#selfcare
#spoonie
#mentalhealth
6
14
36
““Even when it’s not recemmended we
#stayathome
, I don’t always leave the house because I enjoy being at my
#home
. I have created a safe, loving space that is very inviting & I enjoy being in.” – Jennifer Brightbill":
#ChronicLife
#spoonie
#ChronicallyIll
4
6
39
“Most people have the best of
#intentions
when speaking to those who struggle with their
#health
. That said, remarks by friends and family are often off the mark”:
@toni_bernhard
#spoonie
#chronicillness
#communication
0
7
23
"Many with
#chronicillness
or
#disabilities
need to adapt their
#houses
to make things more
#accessible
. This can be a simple change..but often we need to invest in certain areas that may not come cheap":
#disabled
3
15
37
[Archives] "We’re not meant to change anyone who isn’t willing or ready to change. What we can do is
#showup
for them when they are ready to show up for themselves":
#quote
#chroniclife
#spoonie
#friend
9
22
38
“When I lost my job to
#chronicillness
it hurt more than the physical pain of my
#rheumatoidarthritis
. I lost a huge part of my
#identity
when I lost my ability to work. It took a major toll on my
#mentalhealth
":
@whatapain_blog
#career
6
14
39
"There'll be many surprises when u start getting to know yrslf better. U'll b impressed w yr
#abilities
& unlock hidden
#potential
..might even start to like yrslf & all the traits that u thought u wanted nothing to do w":
#spoonie
#MentalIllness
#SelfLove
1
6
38
"when you are literally too sick, in too much pain, to go to the
#doctor
. It’s a horrible situation, but almost laughable in how absurd it sounds":
@TheMightySite
#chronicpain
#agony
#chronicillness
#spoonieproblems
2
11
36