Whitney is Wicked
@itswhitneywitch.bsky.social
Disability Justice
Living with ME, EDS, POTS, MCAS, vascular compressions, spinal comorbidities & more
Ambulatory wheelchair user
Cozy gamer, lazy gardener, hopeful baker
Living with ME, EDS, POTS, MCAS, vascular compressions, spinal comorbidities & more
Ambulatory wheelchair user
Cozy gamer, lazy gardener, hopeful baker
I'll never get over receiving a new diagnosis because a provider finally did more than just look with their eyes and tell me I'm normal. Today's new diagnosis - deviated septum. I'm 37yo and have had symptoms since age 11. Today is the first time a Dr ever scoped my nose. Being a woman is so fun /s
October 20, 2025 at 8:07 PM
I'll never get over receiving a new diagnosis because a provider finally did more than just look with their eyes and tell me I'm normal. Today's new diagnosis - deviated septum. I'm 37yo and have had symptoms since age 11. Today is the first time a Dr ever scoped my nose. Being a woman is so fun /s
Any recommendations from the MCAS mind hive on breathe right strips type of product that can help with night time breathing? I've also tried those plastic things that go inside your nose but they hurt my tiny narrow airways
October 20, 2025 at 7:18 PM
Any recommendations from the MCAS mind hive on breathe right strips type of product that can help with night time breathing? I've also tried those plastic things that go inside your nose but they hurt my tiny narrow airways
My infusion company will not send me green caps to cover the line for my port. I've been relying on the stash I had from the prior company and friends sending me caps. Now I'm out again. Any advice on how to get them to send me caps? Or where I can buy affordably? They're not cheap
September 25, 2025 at 5:46 PM
My infusion company will not send me green caps to cover the line for my port. I've been relying on the stash I had from the prior company and friends sending me caps. Now I'm out again. Any advice on how to get them to send me caps? Or where I can buy affordably? They're not cheap
Husband: what should we do this weekend
Me: idk it's the equinox soon we could celebrate that
Husband: so witchcraft this weekend?
Me: hell yeah!
🍂🔮(Falling leaves emoji, crystal ball emoji)
Me: idk it's the equinox soon we could celebrate that
Husband: so witchcraft this weekend?
Me: hell yeah!
🍂🔮(Falling leaves emoji, crystal ball emoji)
September 19, 2025 at 7:09 PM
Husband: what should we do this weekend
Me: idk it's the equinox soon we could celebrate that
Husband: so witchcraft this weekend?
Me: hell yeah!
🍂🔮(Falling leaves emoji, crystal ball emoji)
Me: idk it's the equinox soon we could celebrate that
Husband: so witchcraft this weekend?
Me: hell yeah!
🍂🔮(Falling leaves emoji, crystal ball emoji)
Someone called me today just as I woke up, & ambushed me into meeting a healthcare provider. I usually fawn but I went into fight mode today. 1-I'm not your monkey who will do a little dance and sing all my diagnoses to you and your friends 2-I have a lot of medical trauma & this is traumatizing
September 17, 2025 at 6:15 PM
Someone called me today just as I woke up, & ambushed me into meeting a healthcare provider. I usually fawn but I went into fight mode today. 1-I'm not your monkey who will do a little dance and sing all my diagnoses to you and your friends 2-I have a lot of medical trauma & this is traumatizing
Reposted by Whitney is Wicked
Friends with ME/CFS!
The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion!
Takes ~15 mins but you can save and come back if you need a break.
If you could also share this, that would be a huge help!
The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion!
Takes ~15 mins but you can save and come back if you need a break.
If you could also share this, that would be a huge help!
Can we reach consensus on an ME research case definition?
redcap.is.depaul.edu
September 13, 2025 at 6:15 PM
Friends with ME/CFS!
The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion!
Takes ~15 mins but you can save and come back if you need a break.
If you could also share this, that would be a huge help!
The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion!
Takes ~15 mins but you can save and come back if you need a break.
If you could also share this, that would be a huge help!
Looking for resources and/or advice about starting a 501c3 in the US and how to make it international. Any tips?
September 7, 2025 at 6:57 PM
Looking for resources and/or advice about starting a 501c3 in the US and how to make it international. Any tips?
Reposted by Whitney is Wicked
I’m going to say this louder this time: if you are lying about having a high-risk condition to get a Covid vaccine, all good, do what you want to do BUT show some actual goddamn respect for people who *actually* have that condition and start masking.
August 31, 2025 at 1:01 AM
I’m going to say this louder this time: if you are lying about having a high-risk condition to get a Covid vaccine, all good, do what you want to do BUT show some actual goddamn respect for people who *actually* have that condition and start masking.
Me and my friends, trying to have our needs met in this economy like:
And I guess this is a lot of what I talk about in my advocacy, but who tf has time to pursue this kind of extremely specialist care when they don't have basic needs met like housing
August 29, 2025 at 6:57 PM
Me and my friends, trying to have our needs met in this economy like:
Reposted by Whitney is Wicked
August 29, 2025 at 4:17 PM
One of the funny things about living with a rare disease is sharing knowledge about that rare disease and friends saying "I thought everyone had that!" Today's case - sacral dimple in tethered cord. No babe, most people don't have that
August 29, 2025 at 5:24 PM
One of the funny things about living with a rare disease is sharing knowledge about that rare disease and friends saying "I thought everyone had that!" Today's case - sacral dimple in tethered cord. No babe, most people don't have that
I'm not surprised but I am constantly amazed by how much better care my cat receives from her vet than any human I know receives from the US medical system
August 12, 2025 at 9:09 PM
I'm not surprised but I am constantly amazed by how much better care my cat receives from her vet than any human I know receives from the US medical system
I guess AI is doing autocorrect now because it keeps changing in to on and on to in automatically and it doesn't make any sense
August 7, 2025 at 5:01 PM
I guess AI is doing autocorrect now because it keeps changing in to on and on to in automatically and it doesn't make any sense
Every time I see my PCP she tells me to write a book. Because she's getting more and more young people with the same disease cluster as me and they're telling her things like, "id rather die than live like this." People with ME, POTS, EDS, MCAS, etc deserve better.
July 25, 2025 at 7:59 PM
Every time I see my PCP she tells me to write a book. Because she's getting more and more young people with the same disease cluster as me and they're telling her things like, "id rather die than live like this." People with ME, POTS, EDS, MCAS, etc deserve better.
I just wanna knit but my hands won't stop sweating and then it's sensory hell. Why can't you chill out dysautonomia symptoms 😭😭
July 17, 2025 at 7:53 PM
I just wanna knit but my hands won't stop sweating and then it's sensory hell. Why can't you chill out dysautonomia symptoms 😭😭
#pwME we really need to talk about the sanism and ableism within our community and unlearn that shit. Yes, #MECFS is biological. And psych conditions can be comorbids. We are ostracizing and harming pwME and psych comorbids who don't have access to adequate physical or mental healthcare
June 23, 2025 at 5:43 PM
Reposted by Whitney is Wicked
PSA Neck gaiters are not masks. Neck gaiters are not effective at stopping the spread of airborne viruses. Masks, especially well-fitting ones are effective at preventing infection. Conflating the two is bad because it can encourage politicians to ban masks for the general public.
June 20, 2025 at 11:02 PM
PSA Neck gaiters are not masks. Neck gaiters are not effective at stopping the spread of airborne viruses. Masks, especially well-fitting ones are effective at preventing infection. Conflating the two is bad because it can encourage politicians to ban masks for the general public.
My outdoor walker is now home to a birds nest and eggs! Guess I'll be using my cane in the backyard for a bit, but I'm so happy discovering this! Any ideas what kind of bird it could be? We have lots of finches and sparrows around. It's not muddy like a swallow nest.
June 4, 2025 at 12:05 AM
My outdoor walker is now home to a birds nest and eggs! Guess I'll be using my cane in the backyard for a bit, but I'm so happy discovering this! Any ideas what kind of bird it could be? We have lots of finches and sparrows around. It's not muddy like a swallow nest.
Reposted by Whitney is Wicked
It’s been said before but the more “I didn’t vote for *this*” stories we get the more I’m convinced the pandemic acted as a Mass Forgetting Event. A Great Reset. An actual Memory Hole.
May 31, 2025 at 9:53 PM
It’s been said before but the more “I didn’t vote for *this*” stories we get the more I’m convinced the pandemic acted as a Mass Forgetting Event. A Great Reset. An actual Memory Hole.
Happy #BlueSunday #TeaPartyForME
I had some homemade blueberry lemon scones with blue spirulina icing and a cappuccino. I gave to @openmedf.bsky.social today 💙
Please give to #MECFS awareness and research funding here: the-slow-lane.com/donation-pag...
I had some homemade blueberry lemon scones with blue spirulina icing and a cappuccino. I gave to @openmedf.bsky.social today 💙
Please give to #MECFS awareness and research funding here: the-slow-lane.com/donation-pag...
May 18, 2025 at 9:45 PM
Happy #BlueSunday #TeaPartyForME
I had some homemade blueberry lemon scones with blue spirulina icing and a cappuccino. I gave to @openmedf.bsky.social today 💙
Please give to #MECFS awareness and research funding here: the-slow-lane.com/donation-pag...
I had some homemade blueberry lemon scones with blue spirulina icing and a cappuccino. I gave to @openmedf.bsky.social today 💙
Please give to #MECFS awareness and research funding here: the-slow-lane.com/donation-pag...
Reposted by Whitney is Wicked
Why does “learning to live with covid” mean accepting repeat infections as inevitable?
Why does it mean throwing the vulnerable to the wayside, unsafe healthcare & mass disability?
That’s not “living with it”. That’s giving up
We need to adapt. Clean air, paid time off, masks in healthcare.
Why does it mean throwing the vulnerable to the wayside, unsafe healthcare & mass disability?
That’s not “living with it”. That’s giving up
We need to adapt. Clean air, paid time off, masks in healthcare.
May 18, 2025 at 8:26 PM
Why does “learning to live with covid” mean accepting repeat infections as inevitable?
Why does it mean throwing the vulnerable to the wayside, unsafe healthcare & mass disability?
That’s not “living with it”. That’s giving up
We need to adapt. Clean air, paid time off, masks in healthcare.
Why does it mean throwing the vulnerable to the wayside, unsafe healthcare & mass disability?
That’s not “living with it”. That’s giving up
We need to adapt. Clean air, paid time off, masks in healthcare.
Reposted by Whitney is Wicked
The BMJ has now published my rapid response to Miller et al's Opinion piece.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
May 16, 2025 at 8:58 AM
The BMJ has now published my rapid response to Miller et al's Opinion piece.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
Reposted by Whitney is Wicked
Please do not fall for these lies. RFK Jr has cut funding to Long COVID research, disbanded Long COVID committees, and spread misinformation about COVID vaccines and treatments. He can not be trusted to meaningfully advance Long COVID treatments, and will only exploit vulnerable communities.
During the Senate Health, Education, Labor, and Pensions (HELP) Committee hearing with Health Secretary Robert F. Kennedy Jr. today, Kennedy testified that he is "100% committed to finding treatments for Long COVID."
The Sick Times will continue to follow the story.
The Sick Times will continue to follow the story.
May 14, 2025 at 8:59 PM
Please do not fall for these lies. RFK Jr has cut funding to Long COVID research, disbanded Long COVID committees, and spread misinformation about COVID vaccines and treatments. He can not be trusted to meaningfully advance Long COVID treatments, and will only exploit vulnerable communities.
Special thank yous to the people who post on #MECFS & #fibromyalgia awareness day. 6 years ago I was following Dr orders that diet & exercise would relieve my symptoms and I was rapidly declining into severe ME. You taught me to rest & pace. You helped me id comorbids and find effective treatments
May 12, 2025 at 9:31 PM
Special thank yous to the people who post on #MECFS & #fibromyalgia awareness day. 6 years ago I was following Dr orders that diet & exercise would relieve my symptoms and I was rapidly declining into severe ME. You taught me to rest & pace. You helped me id comorbids and find effective treatments