#MECFS never gets easier to accept.
Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.
Each year though, my overall baseline declines.
It feels like dying slowly and painfully. Never knowing when your body will just quit.
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Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.
Each year though, my overall baseline declines.
It feels like dying slowly and painfully. Never knowing when your body will just quit.
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And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)
In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.
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In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.
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Any one of the typical #MyalgicEncephalomyelitis symptoms, turned up to an 8/10 intensity, would be difficult to live with after awhile. It would wear you down.
By the time you get to 3-4 of these symptoms, it’s debilitating.
Imagine getting to 100-200 daily symptoms.
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By the time you get to 3-4 of these symptoms, it’s debilitating.
Imagine getting to 100-200 daily symptoms.
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Now, imagine we take those 100-200 symptoms and turn them up in intensity every year.
And then fluctuate a few wildly so that you can never really pin down a treatment protocol.
Can you imagine how that grinds down on your spirit? How relentless it is?
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And then fluctuate a few wildly so that you can never really pin down a treatment protocol.
Can you imagine how that grinds down on your spirit? How relentless it is?
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Oh, but we’re not done.
Now, let’s add in 5-8 common comorbidities that each cause havoc on their own, but added to #MECFS are especially challenging.
#Fibromyalgia #ChronicPain #EDS #hEDS #MCAS #POTS #IBS #Gastroparesis #CCI
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Now, let’s add in 5-8 common comorbidities that each cause havoc on their own, but added to #MECFS are especially challenging.
#Fibromyalgia #ChronicPain #EDS #hEDS #MCAS #POTS #IBS #Gastroparesis #CCI
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Think I’m done now? No.
We haven’t even addressed the medical trauma, gaslighting, misogyny, racism, ableism, dismissal and ineffective systems that we have to deal with.
There is so much to unpack with each of these. But I’ll share a few examples for those new to this…
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We haven’t even addressed the medical trauma, gaslighting, misogyny, racism, ableism, dismissal and ineffective systems that we have to deal with.
There is so much to unpack with each of these. But I’ll share a few examples for those new to this…
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Wait times are ridiculous for most of us.
But multiply those wait times with the number of specialist we get pushed around to…if we’re even lucky enough to access that level of care.
And referrals are usually sent one at a time. Then we wait 2-3 years…
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But multiply those wait times with the number of specialist we get pushed around to…if we’re even lucky enough to access that level of care.
And referrals are usually sent one at a time. Then we wait 2-3 years…
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…to see someone who thinks we’re “fine”…
…because they checked the organ or system they are interested in and didn’t understand what they were seeing or being told by the patient.
So our doctor sends the next referral and we wait.
It can take decades to do this dance.
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…because they checked the organ or system they are interested in and didn’t understand what they were seeing or being told by the patient.
So our doctor sends the next referral and we wait.
It can take decades to do this dance.
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I’ve been sick for 12 years with this bout of #PostInfectiousIllness.
I am still waiting to see specialists.
Some spend less than 10 minutes with me, after a 2-3 year wait, and tell me to do high intensity interval training or yoga and send me on my way.
I wish I could.
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I am still waiting to see specialists.
Some spend less than 10 minutes with me, after a 2-3 year wait, and tell me to do high intensity interval training or yoga and send me on my way.
I wish I could.
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Some specialists tell me that I’m not experiencing what I say I am. 😒
Some shame me & beat me down in their office for thinking I know something about my body or my illnesses.
After waiting for years to see them, with such hope…
…I leave in tears, feeling hopeless.
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Some shame me & beat me down in their office for thinking I know something about my body or my illnesses.
After waiting for years to see them, with such hope…
…I leave in tears, feeling hopeless.
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I’m not an angry person. But this type of experience will cause anyone to feel anger.
Sometimes I want to cry or even tell them off.
But I don’t. Because it’ll just end up in my file forever and affect future interactions.
So I thank them for the shame and dismissal.
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Sometimes I want to cry or even tell them off.
But I don’t. Because it’ll just end up in my file forever and affect future interactions.
So I thank them for the shame and dismissal.
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The amount of emotional strength that one needs to navigate this mess of a healthcare system is beyond what is fair or reasonable.
These systems are built by healthy people, who have been trained by other healthy people, for only healthy people.
I do not fit.
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These systems are built by healthy people, who have been trained by other healthy people, for only healthy people.
I do not fit.
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I have trauma from interacting with the medical system.
I avoid even simple appointments for refills. (I skip doses to stretch out meds so that I can avoid having to discuss my symptoms.)
I put off getting preventative care, despite now being at a much higher risk.
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I avoid even simple appointments for refills. (I skip doses to stretch out meds so that I can avoid having to discuss my symptoms.)
I put off getting preventative care, despite now being at a much higher risk.
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And I actively avoid the emergency room at all costs.
I sit at home some nights struggling to breathe, swallow or with chest pain, not knowing if I will wake up.
But I know it’ll only end in gaslighting, misogyny & trauma. Oh, and dismissal after waiting for 10-14 hours.
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I sit at home some nights struggling to breathe, swallow or with chest pain, not knowing if I will wake up.
But I know it’ll only end in gaslighting, misogyny & trauma. Oh, and dismissal after waiting for 10-14 hours.
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Most of you are unaware of how #ableist our society and systems are.
That’s a type of #privilege you have.
#Sexism and #misogyny are also embedded deeply. You may not face that.
That might be another type of privilege you have.
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That’s a type of #privilege you have.
#Sexism and #misogyny are also embedded deeply. You may not face that.
That might be another type of privilege you have.
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Racism is also deeply embedded in our medical system.
And while I have privilege in not facing this type of discrimination and harm, it is not something any of us can ignore.
We must all actively commit to learning about these “-isms” and how to dismantle them.
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And while I have privilege in not facing this type of discrimination and harm, it is not something any of us can ignore.
We must all actively commit to learning about these “-isms” and how to dismantle them.
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If you’ve read this far, you may feel overwhelmed by the problems.
That’s also how we feel. So we have that in common.
For us though, these problems are not theoretical. They are real and upon us every minute of every day.
We have to face them while also very sick.
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That’s also how we feel. So we have that in common.
For us though, these problems are not theoretical. They are real and upon us every minute of every day.
We have to face them while also very sick.
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We need allies who want to partner with us.
Read that again.
We need allies who want to PARTNER with us.
“Nothing About Us, Without Us.”
(Credit to IDA for photo.)
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Read that again.
We need allies who want to PARTNER with us.
“Nothing About Us, Without Us.”
(Credit to IDA for photo.)
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Our #pwME community is filled with incredibly dedicated leaders.
We need our allies to support our efforts, to contribute knowledge and resources.
We need you to use your networks, your voices and your privileges to open doors for us.
We need respectful partnerships.
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We need our allies to support our efforts, to contribute knowledge and resources.
We need you to use your networks, your voices and your privileges to open doors for us.
We need respectful partnerships.
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We do NOT need “saviour” types who waltz in, take over from those of us who have been here for years, and recreate wheels and mistakes that *we* end up being left with, when they waltz back out because the limelight no longer shines on the issues at hand.
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Except now we must continue our efforts *without* the extra knowledge and resources that had been made available.
Because those were wasted.
You see what I’m saying? “Saviours” role in and role out, leaving harm and waste behind them.
We do not need/want that.
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Because those were wasted.
You see what I’m saying? “Saviours” role in and role out, leaving harm and waste behind them.
We do not need/want that.
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This is why our #pwME community has been trying to partner effectively, since the beginning of this pandemic, to address key issues arising from the pandemic.
Why did it need to be so hard?
Why weren’t we immediately recognized as experts?
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Why did it need to be so hard?
Why weren’t we immediately recognized as experts?
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What have #PwME (as patients, professionals, advocates, research partners, leaders) gained from EVERYTHING I have listed above…if not immense knowledge and experience.
Is it all for nothing?
Does it hold no value to those in positions of power?
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Is it all for nothing?
Does it hold no value to those in positions of power?
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These are the questions I ask myself, when I am laying here, everyday, suffering.
Does it have to be this hard? No.
But fixing any of this needs a different type of leadership.
Our #MECFS community + leaders from research/healthcare need to work together.
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Does it have to be this hard? No.
But fixing any of this needs a different type of leadership.
Our #MECFS community + leaders from research/healthcare need to work together.
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And we need to do so with expediency and efficiency.
Many in our #PwME community are ending their lives because of the immense physical suffering. Because of the poverty that seems acceptable to our society. Because of the lack of care they can access.
Please….
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Many in our #PwME community are ending their lives because of the immense physical suffering. Because of the poverty that seems acceptable to our society. Because of the lack of care they can access.
Please….
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Please…do something differently. 🙏
What you are doing now is not working.
You are just repeating the same mistakes again. And again. And again.
While we lay in these prisons and wait.
It can be better. You can make our waiting bearable.
Please do it. 🙏 💔
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What you are doing now is not working.
You are just repeating the same mistakes again. And again. And again.
While we lay in these prisons and wait.
It can be better. You can make our waiting bearable.
Please do it. 🙏 💔
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I am retweeting some of the messages from other patients, in response to this thread.
I do this because I think it is important that you all see that I am not alone in my experience and also that acknowledging these issues can be validating for our community.
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I do this because I think it is important that you all see that I am not alone in my experience and also that acknowledging these issues can be validating for our community.
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I have also been asked to record the thread for those who feel it easier to watch/listen, rather than read.
I can absolutely #accommodate that request.
So I will add that to this thread…as soon as I figure out how to.
#MECFS #PwME #MyalgicEncephalomyelitis
I can absolutely #accommodate that request.
So I will add that to this thread…as soon as I figure out how to.
#MECFS #PwME #MyalgicEncephalomyelitis
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