Hi, everyone. Iโm Hannah, and this is my life with chronic illness and disability. I am still fundraising for a service dog. Absolutely no one is obligated to donate! If you could even just share this and the GFM at the top of my page, I would be so thankful. โค๏ธ
โDisability benefits are hard to get because there are so many people fakingโ
No, theyโre hard to get because the government doesnโt want you getting them in the first place.
โYouโre disabled? I wish I could sit at home all day, tooโ
Hey, remember the lockdown when COVID started? Remember how you all cried about how bored you were? Remember how you blamed it on kidsโ mental health declining? Imagine being on lockdown forever. Thatโs being disabled.
I donโt care if someone โcausedโ 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.
โI know someone with *insert disability*, and theyโre able to work and functionโ
I. DO. NOT. CARE. Disability and chronic illness are vast spectrums. I donโt care if you know 83 people with my illness. That does not mean that we are the same.
Just a reminder for Disability Pride Month:
You arenโt inclusive of all disabled people if you donโt include severely mentally ill people. This includes people with โugly disordersโ like BPD, NPD, DID, ASPD, schizophrenia, bipolar 1, severe OCD, etc.
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:
โข Antidepressants
โข Antipsychotics
โข Beta blockers
โข Diuretics
Itโs okay if you are still mourning the life you couldโve had if it werenโt for your disability. I donโt care if itโs been 10 years. You can still grieve.
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.
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 donโt automatically assume that theyโre being dramatic or trying to get out of things.
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.
If you โprovide accommodationsโ but make a disabled person jump through hoops and provide mountains of proof and paperwork, youโre not as accommodating as you believe you are.
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 arenโt harming you is ableist. Hope this helps.
โYou could do it yesterdayโ
And today, I can't. Let's talk about dynamic disabilities! A thread ๐งต:
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.
Chronically ill people cannot predict how their illness will affect them. We donโt know how we will feel later. I donโt care if I could do something five minutes ago. If I say I canโt now, I mean it.
โIf I had a visible disability, people would take me more seriouslyโ
They wonโt. 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.
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.
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?
So, youโre going to doctors and trying to get them to listen. Been there. Here are some tips: A thread ๐งต:
โข If they blow you off, ask what their differential diagnosis is. This will catch them off guard, and theyโll have to list actual things that it could possibly be.
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, itโs so much worse.
I wish people understood the mental impact chronic illness and disability causes. Yes, I can go to a therapist, but Iโm still going to be physically sick. Iโm still going to remain mentally impacted by that. A therapist is not going to heal me.
You support my disability, but you think I could do more to get better. You support my disability, but youโre annoyed that Iโm still sick. You support my disability, but you think I talk about it too much.
Your support for disabled people is conditional.
Hi, Iโm Hannah, and Iโm epileptic! Everyone should know basic seizure first aid. A thread ๐งต:
โข Stay with the person until they are alert, and try to time the seizure if possible
โข Do NOT restrain them or try to keep them still
โข Do NOT put anything in their mouths
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.
โYou talk about your illness too muchโ
Have you ever considered that Iโm chronically ill and disabled? I spend most days at home alone. My illness takes up every second of every day. I donโt experience anything else. If you donโt want to hear it, just donโt talk to me.
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)
Iโm tired of it being โnot politeโ 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-
Hi, Iโm 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/?)
Able bodied person: โHave you ever considered that depression is causing all of your issues?โ
Every disabled person: โHave you ever considered that being sick and in pain all the time is depressing?โ
Youโre not as far left as you think you are if you canโt be bothered to put on a mask to protect others. Especially disabled people. Real revolutionaries wear masks.
โข Ask them how they ruled any of those things they just listed out.
โข If they are refusing anything like other testing, request that they note in your chart why they are refusing. Theyโll normally give in immediately.
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 someoneโs health entirely on the most basic of tests.
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.
Do you remember how many people on the left were judging people for not masking in 2020-2022? What happened to that? COVID didnโt go away. Itโs 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.
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
โThere canโt be this many sick people online. They have to be fakingโ
Disabled people spend a ton of time at home. Others are normally on the internet less than we are. The internet is a disabled personโs connection to the world. Weโve been here. Weโre just in your face now.
You cannot tell how sick someone is based on their online presence. Stop using social media as a reason someone โcouldnโt possibly be this sick.โ
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/?)
โข Speak up if you disagree, and emphasize that you know yourself and your body. Donโt let them run over you. Come prepared, and stand your ground. Your health is more important than their ego.
โข Specifically ask what their evidence is against why you canโt have a certain thing or why you donโt need more tests.
โข 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.
There needs to be room for disabled people to be angry. To be sad. To be bitter. We donโt have to be positive, and weโre 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.
โToday, COVID no longer controls our livesโ -
@JoeBiden
It may not control your life, but itโs 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.
Stop ๐๐ป commenting ๐๐ป on ๐๐ป peopleโs ๐๐ป use ๐๐ป of ๐๐ป mobility ๐๐ป aids
Iโm so tired of hearing โYay! Youโre not using your aid!โ because I know it will be followed by disappointment and shame when I need it later. Ambulatory users shouldnโt have to worry about your feelings.
Hey,
@JoeBiden
. Weโre still here. This is my life now along with millions of others. It may not control YOUR life, but it is ours. You wonโt erase us.
#longcovid
#LongCovidAwareness
โข Now, depending on the doctor, that could backfire. They could say youโre depending on the internet instead of the doctor. Again, ask them how they ruled it out.
โข Make a list of all of your concerns and symptoms, and bring it with you too.
I turn 26 today. I was 23 when I got sick and lost my life to COVID. I havenโt 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 Iโve had yet.
#LongCovid
If healthy people experienced what we experience daily with chronic illness, they would be sitting in the emergency room begging for help. Yet, weโre expected to go through our days like normal and not complain because it annoys other people.
@ALReproRightsAd
I donโt need you to explain things about my life to me while youโre calling disabled people fakers in the replies. I know the process. Thanks.
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 doesnโt affect you yet?
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 isnโt relaxing for us. Chronically ill people still feel awful in bed, too. Being at home isnโt a fun time for us. Itโs a prison.
"COVID is no big deal"
COVID-19 has contributed to more than 40 million new cases of neurological disorders worldwide. People who had COVID are 80% more likely to suffer from epilepsy or seizures. They have a 77% higher risk of developing severe memory issues.
Many doctors say five minutes, many say two. I say two to be safe.
โข Also call 911 if
- They donโt return to a normal functioning state
- Have issues breathing
- Theyโre injured or pregnant
- Itโs their first seizure
- They have multiple back to back
Be safe!
This is James updating for Hannah, for the third time in less than a week, she has been transported to a hospital by ambulance due to repetitive seizures and vomiting. Will update as I can.
I really wish thoughts of suicide after COVID infection and with long COVID were talked about more. Disability in general, really. I am suffering. We are suffering. Itโs 5 AM, and the sadness is crushing me. There are probably millions up right now just like me.
My loved ones are terrified to leave me alone. Iโm terrified of sleeping because I could not wake up. I spend my days in bed alone because life goes on without me. This is the reality of it. 1 in 5 infections end with long COVID. You are not invincible. (7/7)
โข Make sure no one walks over them
โข If theyโre having a focal/absent one (non-convulsive), just help steer them clear to a safe area, and, again, stay with them
โข Check them for an ID bracelet in case it says to administer emergency meds
โข If they are convulsing, turn them on their sides
โข Try to tilt the head and mouth towards the ground
โข Loosen tight clothes around the neck, and place something soft under the head if you can
โข Call 911 immediately if the seizure lasts longer than two minutes
The amount of hate I get by posting my videos and my story on TikTok makes me never want to post again. The amount of pure denial and hatred is disheartening. Then, I think about the people like me that may be watching and find comfort. Maybe they donโt feel alone.
โข Certain antihistamines like Benadryl
โข Stimulants such as Adderall
โข ACE inhibitors such as Lisinopril
โข Benzodiazepines
โข Calcium channel blockers
โข Some mood stabilizers such as lithium
KNOW THE SIGNS:
Heat exhaustion:
โข Dizziness and increased heart rate
โข Thirst
โข Heavy sweating and pale skin
โข Nausea and headache
โข Weakness
Heat stroke:
โข Altered mental status and slurred speech
โข Loss of consciousness
โข Extremely high body
temperature
One moment, we can do certain tasks. The next, we can't do it at all, or we need extra help doing so. I may be able to meet a friend today but be completely incapacitated and unable to move
tomorrow.
I wish able bodied people understood that being forced to rest and lay around because of sickness isnโt the same as them getting to rest. Itโs not enjoyable.
Ambulatory mobility aid users have dynamic disabilities. We might be able to do something without our aids one second and then need it ten minutes later. I know it can be confusing to never know if we'll be able to do things, but please try to be understanding.
โDisabled people are lazy and donโt want to workโ
Disabled person: โHi, Iโm disabled. Iโd really like to work here, but Iโll need a lot of accommodationsโ
Non-disabled person: โNo. Too much workโ
The end.
Hi, everyone. Iโm Hannah, and this is my life with chronic illness and disability. I am still fundraising for a service dog. Absolutely no one is obligated to donate! If you could even just share this and the GFM at the top of my page, I would be so thankful. โค๏ธ
โข Dry, red skin
โข Hallucinations
โข Inability to sweat
Please check with your pharmacist when picking up your medication to double check. Heat related illnesses are serious and can result in fatality.
I turn 26 at the end of this month. Itโs been years. Being disabled at this age is something that no one wants or asks for. This is real. This is happening. We are suffering.
#longcovid
#iamlongcovid
I never got better thanks to long COVID. Iโve been officially diagnosed with epilepsy. The back to back seizures have damaged my brain and caused severe dementia type symptoms, spelling problems, mood changes, and issues understanding simple things. Like brain fog x1000. (3/7)
Shout out to chronically ill people that have illnesses that are under-researched. I know how isolating and sad it is. It feels like youโre screaming for help, and no one is listening. Youโre not alone.
From the bottom of my heart, I do not care if you want me to stop talking about COVID. I hope it annoys you. I hope it gets under your skin. Millions of us are sick. Trust me, itโs worse for us. You just donโt want to hear it.
At age 26, Iโm preparing to write a will and an advance directive. Why? Because the virus people still claim isnโt a big deal took my life from me.
#longcovid
Iโm back in therapy and starting new medication while upping my current medication. My second appointment is coming up. Iโm okay and safe now. I just wanted to post this to show another side. This is something we need to talk about more. (4/?)
POTS which has caused me to be hospitalized with multiple concussions and injuries. Iโm on IV infusions and medication for that. I use a wheelchair. I can no longer legally drive. Diabetes. An autoimmune disease. Chronic and debilitating fatigue. Vision deterioration. (4/7)
โWhat is one thing youโd tell healthy people as a chronically ill and disabled person?โ
You take too many things for granted. Things you donโt even realize matter to you right now. Theyโll matter if you lose it all. Youโll miss every little thing. Trust me.
I liked doing things with people and my spouse. I loved traveling, going on adventures, reading, drawing, painting, and I even loved having a job. I also had a healthy immune system. This was all until I contracted COVID in August of 2020 before the Vs even existed. (2/7)
I had to withdraw from college, quit my job, and I never see anyone but doctors and my family. It takes me an hour to make a 30 sec. TikTok. I can no longer draw, travel, and I struggle with reading which is my favorite thing to do. My mind canโt even grasp audio books. (6/7)
You guys literally had me on your show a year and a half after I was disabled by COVID. The host said I was one of the worst cases heโd heard of. You made a big deal about long COVID, and now you act like you donโt know why people are sick.
I had to have my thyroid removed. I lost half of my hair. I have a hard time breathing and extremely low oxygen at some points. I can barely make it across my apartment. Chronic pain and muscle aches. Tooth decay. Increased mental health issues and suicidal ideations. (5/7)