Han 🖤
@spoonfulofhan
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Hannah • Long COVID • POTS • Hashis • Epilepsy • ME/CFS • Mental Health Awareness • 🇵🇸 🏳️🌈 Please read my GFM below! You can also buy my book below!
Birmingham, AL
Joined June 2022
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My sweet grandparents. My grandfather had his port placed and is soon beginning treatment. They have appointment after appointment this week. My grandmother had to take a leave of absence. It sounds like they’ve given him around a year. Please consider donating or sharing.
I have created a GoFundMe for my grandfather. He had brain surgery to remove a tumor a few weeks ago in the ICU. He was just diagnosed with stage 4 lung cancer that metastasized. It’s okay if you can’t donate. Please just share. I love him so much.
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“Disability benefits are hard to get because there are so many people faking”
No, they’re hard to get because the government doesn’t want you getting them in the first place.
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“You should care about disabled people because it can happen to you.”
They should care about disabled people regardless. We’re human beings.
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“You’re disabled? I wish I could sit at home all day, too”
Hey, remember the lockdown when COVID started? Remember how you all cried about how bored you were? Remember how you blamed it on kids’ mental health declining? Imagine being on lockdown forever. That’s being disabled.
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“I wish I could stay home like disabled people”
Do it then. Stay in bed for a week. Hungry? You need someone else to fix it. Need to go to the store? Can’t drive. Bored? It doesn’t matter. Need to shower? Too tired. Uncomfortable from being in bed? That’s unfortunate.
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Medical gaslighting that results in misdiagnosis or late diagnosis should be considered malpractice. Sick people shouldn’t have to suffer because of a medical professional’s ego.
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I don’t care if someone “caused” their disability. Like smokers getting lung cancer or addicts having cardiac issues or alcoholics getting liver damage. They are still sick, and they are still disabled. They still matter, and they are still people.
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“I wish I could rest as much as you do”
Please remember that disabled people are not home relaxing. We are sick. We are in pain. We are still exhausted while resting. We are bored. It’s not a fun little vacation. We are miserable.
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“I know someone with *insert disability*, and they’re able to work and function”
I. DO. NOT. CARE. Disability and chronic illness are vast spectrums. I don’t care if you know 83 people with my illness. That does not mean that we are the same.
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Just a reminder for Disability Pride Month:
You aren’t inclusive of all disabled people if you don’t include severely mentally ill people. This includes people with “ugly disorders” like BPD, NPD, DID, ASPD, schizophrenia, bipolar 1, severe OCD, etc.
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ATTENTION ALL MENTALLY AND CHRONICALLY ILL PEOPLE: This is your yearly reminder that your medication could put you at a higher risk of heat related illnesses such as heat strokes and heat exhaustion. Examples:
• Antidepressants
• Antipsychotics
• Beta blockers
• Diuretics
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Everyone always says “prioritize yourself” until you’re chronically ill and you put your health first. Then, you’re just lazy and a burden.
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Forcing disabled people to “not give up” and push past their limits to be considered worthy is ableist and abusive. Disabilities are disabling. Hope this helps.
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Chronically ill people don’t want a diagnosis just because we’re looking for something to be wrong. We want a diagnosis so that we can validated, learn about our illness, figure out how to accommodate ourselves, and maybe find ways to manage it. It’s not a hard concept to grasp.
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It’s okay if you are still mourning the life you could’ve had if it weren’t for your disability. I don’t care if it’s been 10 years. You can still grieve.
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The disability comes before diagnosis.
Undiagnosed people are just as valid and welcome in the disabled community as diagnosed people.
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THIS. “High functioning” is a term created by non-disabled people. It just means that it’s “less annoying” and easier for THEM to deal with, not that it’s easier for YOU to live with.
The use of the term “high functioning” is harmful and contributes to the minimization of the experiences of those who don’t “appear” to have support needs. Let’s all try to make an effort to phase this out of our vocabulary to make a safer environment for all.
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The fact that chronically ill and disabled people are in shock when a medical professional actually listens to them says everything you need to know about the healthcare system.
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Dear parents,
If your child starts complaining about pain or not feeling well constantly, consider that they may have a chronic illness and need help. Please don’t automatically assume that they’re being dramatic or trying to get out of things.
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Why is it almost impossible for able bodied people to believe that healthcare professionals can be awful? That a massive amount of them are? I wish you believed disabled people as much as you believe that doctors can do no wrong.
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If you “provide accommodations” but make a disabled person jump through hoops and provide mountains of proof and paperwork, you’re not as accommodating as you believe you are.
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Most chronically ill people refuse to go to the hospital because we know that we’ll be sitting in the ER feeling the exact same as we could be feeling at home in bed. The ER helps us less than you think they do.
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Asking chronically ill and mentally ill people to alter how they act and feel so that you can feel more comfortable around them when they aren’t harming you is ableist. Hope this helps.
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“I don’t let me disability stop me”
Good for you. Some people can’t just push through, and we’re still worthy.
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“You could do it yesterday”
And today, I can't. Let's talk about dynamic disabilities! A thread 🧵:
A dynamic disability is one that fluctuates in severity. This can be week by week, day by day, or even hour by hour. It's hard to predict how we'll feel.
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“If I were physically ill instead of mentally, they’d care”
No, they won’t.
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Chronically ill people cannot predict how their illness will affect them. We don’t know how we will feel later. I don’t care if I could do something five minutes ago. If I say I can’t now, I mean it.
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When will doctors understand that a regular blood panel is not enough when a patient is telling them that something is wrong? You cannot base someone’s health entirely on the most basic of tests.
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“If I had a visible disability, people would take me more seriously”
They won’t. People that have visible aspects of their disability face extreme ableism and discrimination as well. We receive gaslighting and dismissal like you. Both come with mistreatment.
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Significant others and family members pushing disabled people to go past their limits and making them feel awful when they can’t is emotional abuse. You just aren’t ready to hear that yet.
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I want to work. I want to have a clean home. I want to cook amazing meals. I want to go on a run. My chronically ill and disabled body will not allow me to. I am not lazy.
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Disabled people don’t owe you productivity. Disabled people don’t owe you silence. Disabled people don’t owe you inspiration. Disabled people owe you nothing.
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Letting my disability stop me keeps me safe. It stops me from overdoing it. It stops me from hurting myself. It stops me from causing flares. If my body needs to stop, I will let it. I don’t owe able bodied people an explanation or shame.
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You have to show tons of proof to receive disability. Doctors letters, medical records, scans, testing, etc. 80% of people are denied the first time and have to go before a judge. That can take years. You think people fake to not even be able to live on the tiny check they get?
@spoonfulofhan
No, most recipients are fakers. Look at the able bodied stoners at medical weed outlets, for example.
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One of the most terrifying feelings as a chronically ill and disabled person is not knowing when you can trust a medical professional.
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So, you’re going to doctors and trying to get them to listen. Been there. Here are some tips: A thread 🧵:
• If they blow you off, ask what their differential diagnosis is. This will catch them off guard, and they’ll have to list actual things that it could possibly be.
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No one can ever explain how much it sucks actually having mental illnesses and chronic illnesses at the same time. Doctors already try to blame everything on anxiety and say everything is psychosomatic. When you actually have mental illness in your chart, it’s so much worse.
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Chronic illness is wishing you never showed your “good” symptom days because it’ll always be used against you
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I wish people understood the mental impact chronic illness and disability causes. Yes, I can go to a therapist, but I’m still going to be physically sick. I’m still going to remain mentally impacted by that. A therapist is not going to heal me.
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And a huge percentage of these DV victims are disabled. Disabled people are high risk for being kept in abusive environments.
So many DV victims are forced to stay in escalating abusive situations because they can't pay rent by themselves.
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People don’t understand the fear that chronically ill people have of getting worse. It could happen at any point. We are always on our toes wondering which new symptom or which flare could be the turning point.
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Disabled people are NOT immune to being ableist. Please realize that.
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You know you’re chronically ill when you find yourself wishing that you could clean
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I will never stop talking about the dangers of COVID. I have been sick for four years since August of 2020 (before vaccines were even released). This is real. It is happening. People ignoring it doesn’t make them invincible.
Opinion | Why it’s time to stop scaremongering about Covid
It’s wrong to try to change minds by distorting the science, writes
@ClareWilsonMed
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You support my disability, but you think I could do more to get better. You support my disability, but you’re annoyed that I’m still sick. You support my disability, but you think I talk about it too much.
Your support for disabled people is conditional.
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Chronic illness core because when we do actually complain, that’s a problem as well
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As a chronically ill person, I have a right to my anger. To my sadness. To my bitterness. Stop policing how sick people feel.
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“Be grateful that it isn’t worse”
Disabled people are allowed to be angry. I don’t have to be thankful for what I was given. I don’t owe you inspiration or a constant uplifting smile on my face.
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Being disabled and chronically ill is traumatic. We’re gaslit by doctors, pushed aside by society, some loved ones don’t believe us, our planned futures disappeared, and we’re experiencing our bodies attack themselves. We always feel sick, and we’re in pain. It’s traumatizing.
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As a chronically ill and disabled person, if I say that I can’t do something, I’m not looking for suggestions from able bodied people on how I could possibly do said thing.
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It’s 3:24 AM. I’ve been up crying silently all night after being dismissed by a specialist I waited months to see. This is chronic illness.
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Hi, I’m Hannah, and I’m epileptic! Everyone should know basic seizure first aid. A thread 🧵:
• Stay with the person until they are alert, and try to time the seizure if possible
• Do NOT restrain them or try to keep them still
• Do NOT put anything in their mouths
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To the disabled people that have problems with things like showering and brushing your teeth: you are loved.
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Just a reminder that you can eat healthy food, exercise, completely take care of yourself and STILL end up disabled. You can do everything right, and it can still happen to you.
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I wish I could explain the earth shattering realization that happens when you’re diagnosed with a chronic illness and know that you will never be healthy again.
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“You talk about your illness too much”
Have you ever considered that I’m chronically ill and disabled? I spend most days at home alone. My illness takes up every second of every day. I don’t experience anything else. If you don’t want to hear it, just don’t talk to me.
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I wonder how many of us with chronic illnesses have diagnosable PTSD from how the healthcare system has treated us.
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I am in bed because I am chronically ill and disabled. I am not chronically ill and disabled because I am in bed.
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When a disabled person says that they can’t do something, we don’t mean that we just don’t want to. We also don’t mean maybe. We mean that we physically cannot do it or that we could, but it could really harm us. We have to pay consequences. You don’t.
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It’s not accessible if a disabled person has to jump through hoops to get it.
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Just a reminder that this month is Suicide Prevention Month. Disabled people take up a large percentage of suicides and attempts due to lack of quality treatment, financial strain, loss of autonomy, medical gaslighting, and constant suffering. Check on your disabled loved ones.
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I want to work. I want to do chores around the house. I want to cook amazing dinners. I want to travel. I want to do so many things.
I am not lazy. I’m disabled.
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Hi, my name is Hannah, and COVID took my life from me. I was an athlete for over 10 years and had straight As all through high school. I then graduated with honors, got multiple scholarships, and was years into college for my PsyD. It was my dream. (1/7)
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Chronic illness is so different than acute illness. When I first got sick, people checked on me. As time went on, people became desensitized to it. I’m asked about my sickness less and less, and major medical events don’t make people bat an eye even when I’m still suffering.
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I’m tired of it being “not polite” to talk about COVID now. It is still here even if you put your fingers in your ears and try to ignore it. There is still trauma being inflicted everywhere because of this virus. Not only are people passing away-
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“I don’t let my disability stop me”
You’re measuring your disability against others that may be worse than you. You’ve also been conditioned to view a disability actually disabling someone as bad. This is your own internalized ableism. Being disabled is not a moral failure.
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Hi, I’m Hannah! This is my story of battling long COVID. I got COVID in August of 2020 at 23 years old which turned into COVID pneumonia. Little did I know that I would be completely disabled from then on. It seems as though I get worse every day. (1/?)
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Becoming disabled has made me realize how much the world focuses on things that don’t really matter
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I have a neuropsych appointment this week to evaluate me for post COVID dementia. I’m 26 years old.
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Able bodied person: “Have you ever considered that depression is causing all of your issues?”
Every disabled person: “Have you ever considered that being sick and in pain all the time is depressing?”
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I’m so tired of people thinking that being in a wheelchair or using walkers, canes, and crutches is the end of the world. The worst scenario. Mobility aids are meant to help people do things that they couldn’t comfortably and safely do before. Why is that a failure?
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You’re not as far left as you think you are if you can’t be bothered to put on a mask to protect others. Especially disabled people. Real revolutionaries wear masks.
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• Ask them how they ruled any of those things they just listed out.
• If they are refusing anything like other testing, request that they note in your chart why they are refusing. They’ll normally give in immediately.
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Stop making disabled people the bad guy. Stop assuming we’re sick because we’re deconditioned. Stop assuming we just don’t want to work. Stop assuming we’re lazy. Stop assuming we can do everything an able bodied person can and just choose not to. Stop villainizing us.
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I need non-disabled people to understand something. There are millions of chronically ill and disabled people not going to the doctor or ER right now because of mask mandates dropping. Cancer patients, transplant patients, patients in kidney failure, patients like me.
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Do you remember how many people on the left were judging people for not masking in 2020-2022? What happened to that? COVID didn’t go away. It’s still a mass disabling virus that is killing hundreds and hundreds a week in the U.S. alone. Your comfort just matters more to you.
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“Your illness is so hard for us to be around. We have to watch it”
Pluck out your eyeballs then
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Speaking about how life is with a disability and chronic illness does not mean we have a “victim mentality.” We’re talking about our lives, our reality. We’re not victimizing ourselves.
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As you know, I was disabled by long COVID. I got COVID before the vaccines even existed in the first wave. This is my entire story.
#longcovid
#chronicillness
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I almost took my own life last night. I feel like one of the least talked about things when it comes to COVID is the impact it has on mental health. I have not attempted in a very long time, but COVID really impacted my mental health. (1/?)
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“There can’t be this many sick people online. They have to be faking”
Disabled people spend a ton of time at home. Others are normally on the internet less than we are. The internet is a disabled person’s connection to the world. We’ve been here. We’re just in your face now.
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You cannot tell how sick someone is based on their online presence. Stop using social media as a reason someone “couldn’t possibly be this sick.”
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• Speak up if you disagree, and emphasize that you know yourself and your body. Don’t let them run over you. Come prepared, and stand your ground. Your health is more important than their ego.
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This is what that “little” virus does to people. Just a cold, right?
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“You’ll get better! Don’t lose hope!”
The thing is that many of us won’t. Many of us will be this way forever, and we’re so tired of having to have positive attitudes about our health. Some of us are miserable with life-long conditions. We don’t have to act hopeful for you.
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• Specifically ask what their evidence is against why you can’t have a certain thing or why you don’t need more tests.
• Print out real research and come armed with extra information. This shows how serious you are and that you learned about specific issues and treatments.
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There needs to be room for disabled people to be angry. To be sad. To be bitter. We don’t have to be positive, and we’re tired of having to put on a brave face for people that will never understand. We do not have to be your picture perfect idea of inspiration.
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“Today, COVID no longer controls our lives” -
@JoeBiden
It may not control your life, but it’s ruined millions. This is my life. It will be four years in August. I have epilepsy, POTS, an autoimmune disease, and more. I am still here. We are still here. Long COVID is still here.
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Stop 👏🏻 commenting 👏🏻 on 👏🏻 people’s 👏🏻 use 👏🏻 of 👏🏻 mobility 👏🏻 aids
I’m so tired of hearing “Yay! You’re not using your aid!” because I know it will be followed by disappointment and shame when I need it later. Ambulatory users shouldn’t have to worry about your feelings.
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Hey,
@JoeBiden
. We’re still here. This is my life now along with millions of others. It may not control YOUR life, but it is ours. You won’t erase us.
#longcovid
#LongCovidAwareness
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• Now, depending on the doctor, that could backfire. They could say you’re depending on the internet instead of the doctor. Again, ask them how they ruled it out.
• Make a list of all of your concerns and symptoms, and bring it with you too.
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I turn 26 today. I was 23 when I got sick and lost my life to COVID. I haven’t really even gotten to experience life much. Tight on money because of medical bills and inability to work, always sick, and always home. I think this is the saddest birthday I’ve had yet.
#LongCovid
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If healthy people experienced what we experience daily with chronic illness, they would be sitting in the emergency room begging for help. Yet, we’re expected to go through our days like normal and not complain because it annoys other people.
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@ALReproRightsAd
I don’t need you to explain things about my life to me while you’re calling disabled people fakers in the replies. I know the process. Thanks.
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1,585 people died from COVID this week. 1,585. Are you not appalled? Are you not sad? Are you not outraged? Or are your eyes closed because it doesn’t affect you yet?
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When being at home constantly is no longer a choice, you stop liking it. You stop feeling relieved to be able to be home. You see us in bed, but it isn’t relaxing for us. Chronically ill people still feel awful in bed, too. Being at home isn’t a fun time for us. It’s a prison.
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Why do people use amputees as the gold standard for disability? Disability is a spectrum. Many of us are very sick. I don’t see you saying this to cancer patients. Only people you deem not disabled enough. I don’t owe anyone a reason for treating my disability like a disability.
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