Nele
@NeleHelena
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I tweet about the things I don't like: severe chronic illness / ableism / toxic positivity / medical gaslighting / dysautonomia / MEcfs / autoimmunity
Joined March 2009
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Pinned Tweet
I wish there was more written on very severe
#POTS
#dysautonomia
. It's always "take your fluids + beta-blockers and you'll be fine". Once in a while I read that people need a wheelchair. But it can be way worse. It's never mentioned that some people can't sit or are bedbound 🔋⬇️
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One of the reasons people aren't afraid of
#LongCovid
is because they think 1. that it's just a bit of tiredness and 2. that tiredness is a manageable personality trait that they just don't have. They couldn't be more wrong about both.
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If standard blood tests come back negative but you're still ill that should be the beginning of the search, not the ending.
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What I really hate is when you tell doctors/people that you can't do a particular thing because of your illness and they're like "well you have to", like you're some kinda toddler who doesn't want to instead of someone with disabilities who can't.
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If you think that I (severely chronically ill) can work from my bed for a customer service because occasionally I can tweet, you must know that my responses would be the same as here because that's all I can do.
Customer: I didn't receive the book I ordered
Me: 💔🫂
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I wish there was way more biomedical research on how post viral and autoimmune diseases cause insomnia instead of dropping all that lifestyle advice for healthy people on us. My insomnia isn't caused by bad sleeping habits so there's nothing to fix.
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Most people who have an autoimmune disease are women. So there's so much key information in the fact that most people who suffer from post viral illness are also women. Yet society chose to ignore the obvious and blames it on things like anxiety. Sexism is stronger than facts 1/4
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Before I had my real diagnosis, a psychiatrist gave me a psychosomatic diagnosis and said "there could be a physiological explanation, but I think she's dealing with it dysfunctionally so I'm giving her a psychosomatic diagnosis anyway"
The "disfunctional behaviour" was ⬇️
1/
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Most people assume that as a chronically ill person I'm afraid to get covid and die. But I don't think that risk is much higher for me than for someone else my age. My risk is becoming more chronically ill while my baseline is already too severe
#pots
#longcovid
#mecfs
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A doctor who has no clue about what's happening in your body telling you "I totally believe your symptoms are real" followed by a modern-day mind-body hysteria explanation, has to be one of the most gaslighting things ever.
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I used to be so naive about healthcare. At the beginning of my
#chronicillness
I thought the only thing that I had to do as a patient was tell doctors straight and clear about my symptoms. I didn't know how dangerous that was with a poorly known and misunderstood illness.
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People often think that fatigue in
#chronicillness
is a passive thing and you only have a lack of energy and can lay down and feel ok. They're wrong. It's not just the absence of energy but the very active presence of an exhausting feeling and many unbearable physical symptoms...
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Doctors, stop reporting "patient is afraid of..." when we simply are saying which symptoms we have. Like, how do you want us to communicate our symptoms. You're not a telepath. So we must tell them. But just telling them is often enough for you to think that we're afraid. 1/2
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So I'm pro vax but I became bedbound with
#pots
after my first covid vax. I don't like to speak out about this in public because I'm afraid that I'll attract the antivaxxers or worse that I'll be seen as one myself. But I think we should speak out more about our cases. 1/
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So the only thing I could do was explain it in words. But then they think "wow she's too focused on her symptoms". No I wasn't. I just wanted them to have all the information because it was a big surgery and I wouldn't be able to explain it in the ICU.
#medicalgaslighting
4/
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to know how to take care of me. Yep doctors can do that. They can do whatever they want. And as a patient you're nothing. I do not have dysfunctional behaviour. None of us has. It was just me explaining an undiagnosed existing illness. I didn't know what illness I had. 3/
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It was me telling them my needs about my not-yet-diagnosed autoimmune
#POTS
and
#smallfiberneuropathy
for an upcoming urostomy surgery. He talked to me once, it wasn't a diagnostic conversation. It was in the specific context of that surgery and me wanting the hospital staff 2/
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It's super easy to get the wrong psychiatric diagnoses in your medical file when you have a physiological illness. Especially with conditions like
#MEcfs
#LongCovid
and comorbidities. It's way harder to get them removed. And from now on every new doctor you see can read this.
5/
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To the media writing about the olympic swimmer with
#POTS
. Good that you are writing about this, but please don't make it ableist.
Write about how POTS is a spectrum. Write about how one can be at the olympics, while another one is bedbound and in horrible suffering. 1/
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Many things and illnesses that are wrongly being psychologized by healthcare can simply be explained by
#autoimmunity
.
Healthcare has a history of doing this while ignoring the most obvious and plausible explanation of autoimmunity.
A list of some of those things 🧵⬇️
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Medicine is too focused on death or alive and doesn't care about anything in between.
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Doctors can put in your file whatever they want with minimal explanation. They can present a weakly supported opinion based on prejudices as a fact. And as a patient, you have no protection against this. At best, you can have it removed. But it often pops up again. 6/
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Last month I posted something about my severe chronic illnesses on fb. That was a first. I don't have many people there, just some family members and friends from the past. Most of them have no idea how sick I am. I wanted them to know. It was both a good + a sad experience.
1/6
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When I talk about
#MedicalGaslighting
I sometimes get well-meant responses like
"don't let it get to you" "you're valuable"
But this isn't about what some random people think. This is about people who have an enormous amount of power over you, your body and your wellbeing. 1/
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I just don't understand why there isn't a doctor by my bedside who says, "You're very sick. I'm going to do everything I can to understand your illness and look for safe treatment options. In the meantime, tell me what you need to be as comfortable as possible"
#severeME
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There's only a small window of how you can behave during an appointment if you don't want them to wrongly psychologize normal behaviour. And the more neglected your illness is, the smaller that window becomes. But with this psychiatrist I didn't have a chance. /8
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Sexism is the reason we have such poor knowledge about autoimmunity in general and even poorer knowledge about post viral things like
#pots
#mecfs
#longcovid
and such. We have a long history of wrongly assuming that everything that mainly affects women must be psychological. 3/4
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It's weird to read things about yourself that aren't true, but they're in your file, so to some doctors they're more important than the truth. When you're not paying attention for 5 seconds, you can have the wrong psychiatric diagnosis in your file that will haunt you forever. /7
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Me: I'm bedbound due to my severe chronic illnesses, I can't have visitors or tolerate the presence of other people, I can barely keep my head up long enough in bed to eat
Other person: that must be lonely, let's meet for coffee
🙃🙃🙃
And I know they mean well, but it's weird
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It's overwhelming to be on twitter and follow all the news in
#pots
#longcovid
#mecfs
science. Patients don't want to do that but we have to because most doctors won't. I'm too severe to not do it but I'd love to not have to spend my time on this. It should be our doctors task.
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"You probably rest a lot?"
No. I never rest. I'm bedbound. I lie down and I suffer. I'm sick you know, it's not a lazy sunday. It's writhing, tossing and turning in bed due to unbearable physical suffering.
#severeME
#severePOTS
etc
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It's very scary to possible have a health situation that requires you to go to the hospital when you're also severe chronic ill. Hospitals are for the healthy that are temporary ill. Hospitals are no place for people with little known chronic illnesses.
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And don't tell too little or they will not understand why you need help. Those rules don't apply to most known acute illnesses. It's a chronic illness thing. The more complex your illness is the more you have to understand those rules. Our healthcare system is not built for this.
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Medical research was always focused on men while we have significant differences in how our immune systems work. Differences that could provide us with so much information about autoimmunity in general. But nobody cares because of sexism. 2/4
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I was trying to do the things that I thought they expected from me as a patient. But the more information I gave the more it was misinterpreted. Back then I didn't know there are unwritten rules. Don't tell too much about your symptoms or they will think you're too focused on it.
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Everytime someone with a
#chronicillness
says "I have to work I have no choice I have to pay my bills" I get a bit angry because I also have no choice but in the other direction, if I had to work or die I would die. But I do understand what they try to say ⬇️
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@bennessb
Or other pal: hi it's been a month now, are you feeling better? Can we do that activity now?
Some people really don't get the chronic part of chronic illness.
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Science isn't done in a vacuum but is done in a world where there's much sexism. Our diseases had to endure lots of bad science while the answers could be right in front of us if only we would focus on the immune systems instead of on the emotions. 4/4
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The mental load that comes with being severely chronically ill is just impossible to deal with when being severely chronically ill.
There are so many invisible yet exhausting tasks in managing your own care.
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I'm just some vague memory now. 'Wow Nele she was fun to go out with and now she's very sick'. I don't know, but it feels just so sad to be someone from everyone's past now. Somebody that they used to know. They have only lost me but I've lost all of them.
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Especially when you don't have a clue on what we may have.
And maybe sometimes we are afraid. And other times we aren't. But it's not relevant for your job. They are normal feelings. So stop pathologizing them or seeing ones that aren't even there. 2/2
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Society is too focused on healthy or death but ignores everything in between. With chronic illness you don't want to lose the things you still can do. And when you're like me bedridden and in much physical discomfort (understatement) you can't imagine becoming even more severe.
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And I don't like antivaxxers. They do not care about us and will misuse our stories for whatever it is they're fighting for. But it isn't for better science nor for better understanding of post viral illness or auto-immune diseases or less covid. /6
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There's a narrative out there that
#pwme
are anxious, too focused on their bodies and symptoms, afraid of exercise and therefore deconditioned. At the beginning of my illness I wanted to scream 'but I'm not like that!' But then I realised nobody is. Those patients do not exist...
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Oh and I realize I only received those messages because it was the first time I posted something. If I were to do it more often, people would probably think, 'there she goes again.'
6/6
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If being this ill was just about not being able to do things and having to be in bed all the time I think I could live with it. I wouldn't like it, but okay. But it's how my worst exhaustion physically feels that makes it unbearable. Extreme fatigue is like extreme pain. 1/2
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A lot of people seem to think that people who are chronically ill avoid identifying as disabled because we see it as a bad thing. But that's not the case! Rather the opposite. I'm not primarily identifying as disabled because it doesn't capture how sick I feel all the time. 1/5
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Many people with
#mecfs
#longcovid
#pots
#vaxinjury
are struggling with loved ones who do not believe they are ill. They ask for proof. And although there is proof, this isn't how it should work. Proof is something that should be used in a scientific context, not with loved ones.
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I got a letter. So now that I'm 99% bedbound and can't even sit or leave the house, I finally qualify for free public transportation by bus. Lol.
Those things are always too little too late. Help is always 1000 steps behind your basic needs when you're disabled/chronically ill.
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My friend with the
#MEcfs
version of
#LongCovid
declined after she had to do an at home nasa lean test for
#POTS
. It's awful how she lost her precious baseline and is in bed now for the biggest part of the day 💔
I think a lot of doctors don't understand this. They think... 1/
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Today is
@dutchlauren
's birthday. She past away 5 months ago after she applied for euthanasia because of severe and progressive
#MEcfs
. The process of applying was long and hard. People think it's easy to get euthanasia in the Netherlands. It isn't.
#reMEmberLauren
1/
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Every medical appointment should start with the following words:
You have the right to remain silent. Anything you say can be taken out of context, written in your file, and can and will be used against you as long as you need healthcare in your life.
#medicalgaslighting
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It's really bizarre how many severe chronic illness patients with unbearable physical symptoms and poor life quality have to hear that it's not a problem because it won't damage their organs in a way that would cause them to die immediately.
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I'm still alone and in the dark. They genuinely cared for like 5 seconds. And now they're back to their own lives, which are totally different than mine. It did not impact them in a way that they would start advocating for me and others. They did not change their behavior.
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People often seem to think that it is easy to get euthanasia in the Netherlands. That's not true. Sophie/Joyce, a very severe
#MEcfs
patient, died last week. Her euthanasia was denied 2x. So she
voluntarily stopped eating and drinking, got palliative sedation, and died...
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I hate analyzing my illness. I never had any interest in medicine. I don't want to think about my symptoms, where they come from and how I could maybe improve them. But with some illnesses you're forced to do this because doctors don't do it.
#MEcfs
#dysautonomia
etc
1/2
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Severe fatigue is more like pain. We feel it in every inch of our bodies all the time. We can't escape it. For some of us rest can give some relief but it doesn't go away and it will come back at previous levels sooner than you think. For others like me there is never relief.
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We need vaccines. Without them there would be much more deaths and severe acute illness with all the consequences. But we also need to invest more in research to understand what can go wrong because those chronic illnesses (vax and illness induced) are also very severe. 5/
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My first (and only) covid vax worsened my
#dysautonomia
permanently and made me 99% bedbound.
Something very real and devastating happened to my health. And instead of curiosity from medicine and society, they used it as something in their identity. 🧵⬇️
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Saying "excercise is important" to someone (bedbound) with
#MEcfs
or some other illnesses/disabilities is as pointless as saying "eating vegetables is important" to someone lost in the desert.
We can't + it isn't the thing that's going to make the difference. We need other help.
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If you have
#LongCovid
or
#ME
and consider the use of steroids, please be very careful. It can help some people but for other people, like me, it can make the symptoms way worse. I thought I had nothing to lose. Well it turned out I had lots to lose... 1/
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I once saw a doctor complain about people making their
#chronicillness
their identity. That doctor tells a lot that she's a doctor, whether it's relevant or not.
People make things their identity all the time. But when some groups of people do it, it's suddenly a bad thing. 1/
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I do not like the "I was bedbound for many years and now I can do ... again, don't give up hope!" Well good for you, I'm glad you got a little better because nobody should be this sick. But please don't talk about hope. I know my body. I know my illness is progressive. 1/5
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Shout out to all the untalented pw
#ME
#LongCovid
#POTS
and other
#chronicillness
. I see you 👀 We may not have 5 different degrees, would never have made world peace happen and weren't good in anything except maybe for sitting in a bar and having fun. But we matter too! 1/3
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If you say that vaccines can't do any harm you're also saying that they don't work. A vaccine that works activates your immune system. There's no way to build immunity without an immune system that is doing some work. And in some cases there're things that can go wrong. 2/
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Imagine being very sick and going to the hospital because you need help. But you have
#severeME
and they don't follow scientific guidelines + don't believe in your illness and you enter a nightmare instead.
This is happening to
#SaveCarlasLife
and lots of others right now!
1/
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1. "It affects more women than men so it must be stress" 🚫
So it must be autoimmune you mean! Almost 80% of people suffering from an autoimmune disease are women. It's in our hormones and genes. Our immune system has a higher risk of attacking the body's own healthy components.
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Everytime my illness declined it was permanent. But it feels like that's such a taboo to say in our community. People only want to hear about people that have improvements.
#severePOTS
#MEcfs
#autoimmunity
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'When you hear hoofbeats think horses not zebras'
Doctors are trained to look for more common illnesses (horses) and often miss the rare ones (zebras).
But lots of illnesses like
#POTS
aren't rare/zebras. It's the doctors who are capable of recognizing it that are the zebras.
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Rest for healthy people = going for a walk, watching a movie, drinking tea while reading a book, taking a bath, etc
'Rest' with
#MEcfs
#LongCovid
= lying alone in a dark quiet room with no activities while feeling horrible.
For some, it's the only thing they still can do.
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I joked with a friend that it felt a bit like having a one night stand. It was fun. The memories the day after were also fun. But then that feeling stopped. Because it doesn't mean anything. It's not something that provides me with a deeper satisfaction.
3/6
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Ever since my
#dysautonomia
and
#MEcfs
became more severe most healthcare is no longer accessible to me.
Healthy people often think too literally about accessibility. Like can someone enter a building or not. But it's way more than that.
🧵⬇️
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Meghan is spreading a lot of misinformation because she is talking about things she has no knowledge about.
She has no knowledge about autoimmunity. She doesn't know that autoimmune diseases affect more women than men. She doesn't know that an important subset of those
1/
Why is it that I have never in my life met a man claiming to have "chronic fatigue," "long covid," or "fibromyalgia"?
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People with
#dysautonomia
#MEcfs
and similar illnesses, how bad is the gaslighting and misinformation in your medical records?
I just can't read mine without crying.
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I've just had enough of all those healthy people complaining about how hard it was that they had to stay at home for a short time 3 years ago. If you didn't lose a loved one or your own health it's a very inappropriate thing to do.
#LongCovid
#MEcfs
#dysautonomia
etc
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The world is obsessed with the health of healthy people and couldn't care less about the health of sick people.
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What the vaccine can do the disease can do too. So if you have an illness induced or worsened by a vax you're fucked because the vax isn't safe for you but you now know that you're at high risk for the disease too. 4/
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@White_Kaay
Yep you're not allowed to have a personality once you're sick. Because whatever that personality is, it will be used against you.
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Some things I've learned when my
#dysautonomia
#MEcfs
became severe ⬇️
1. People will randomly pop up saying that they have been bedbound for ... years and now can do ... again. They won't ask anything about my pattern/symptoms. They just tell me that I MUST stay hopeful
🧵⬇️
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With
#MEcfs
it's dangerous to go to the hospital. But Millie had no choice. She needed life saving help. But she is treated by doctors who have no clue about her illness + refuse to listen to experts, making her sicker in horrible ways 💔
#BringMillieHome
#DontLetMEDie
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Society failed severe
#mecfs
#pots
#longcovid
etc patients in three different areas.
1. Treatments. There aren't any. Some treatments help some people with symptom relief. But there's nothing standardized and there's a large group of people who doesn't get any better at all.
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The start or worsening of chronic illnesses like
#pots
#mecfs
#longcovid
can feel like an invisible car accident. Your life changes drastically and for the worse in a second. But people don't see or acknowledge the event that leads to it nor the consequences. 1/5
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The most important mistakes I've made in my life were advised by doctors.
Really, I wouldn't be as sick as I am now if they hadn't advised me all the wrong things while ignoring the right things.
This happens a lot and is a systemic issue in healthcare.
#medicalgaslighting
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Most doctors reason from a patient who notices something in their body that is tolerable but now wants to have it checked to make sure it's nothing serious.
They never reason from people who feel terrible and restrictive things and are not seeking reassurance but relief. 2/3
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And when you're in the second group, most doctors will keep treating you as if you're in the first group. But you don't seek reassurance. You're already in a very serious situation, tried everything you could yourself but didn't get any better. So you want to find a lead. 3/3
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'It's been three years'
No, it's been like forever. Hunderds of years in which goverments had endless opportunities to try to understand how acute triggers can lead to chronic illness and autoimmunity and such things. But nobody cared.
#LongCovid
#MEcfs
#POTS
etc
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3. "Person has multiple symptoms so it must be psychosomatic" 🚫
Wrong! Systemic autoimmune diseases give problems all over the body. But also: when you already have one autoimmune disease your risk of developing another one is higher.
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How much help you'll get when you get a
#chronicillness
isn't based on how sick you are nor on your needs. It's based on how well known and acknowledged your illness is.
That's why you don't want
#longcovid
#MEcfs
#dysautonomia
etc
You will be incredibly sick without any help.
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So the next time you claim that a vaccine can't cause any harm know that you're also claiming that an immune system that is at work can't do anything wrong. While we know that auto-immune diseases can start with such a trigger. 3/
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First the good part: it was a bit overwhelming. I got so many sweet and sincere messages from people who had no clue and genuinely wished it was different for me.
But it also had something very sad. Because after a day or two, the messages stopped...
2/6
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One of my biggest fears with progressive
#POTS
#ME
#autoimmunity
is who is going to advocate for me when I can't do it anymore. Most doctors know way too little about our illnesses. So who will tell them my needs if I can't do it anymore. Do you have someone you trust with this?
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2. "Symptoms started after an infection so it's anxiety" 🚫
Autoimmune diseases often start after an immune system had to do some 'normal' work. In some people that can go wrong and it can also attack the body's own healthy stuff. So please consider this!
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