#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.

1/
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.

2/
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.

3/
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?

4/
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

5/
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…

6/
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…

7/
…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.

8/
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.

9/
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.

10/
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.

11/
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.

12/
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.

13/
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.

14/
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.

15/
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.

16/
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.

17/
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.)

18/ Image
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.

19/
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.

20/
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.

21/
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?

22/
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?

23/
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.

24/
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….

25/
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. 🙏 💔

26/
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.

27/
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

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Sabrina Poirier

Sabrina Poirier Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @Sabrina_Poirier

Jul 5
For those new to #pacing with #LongCovid and/or #MyalgicEncephalomyelitis, healthcare workers will tell you to block time.

Example: 30 minutes of activity. 30 minutes break.

But…

1/
Sadly, that 1:1 ratio does not work for most of us.

We may have to rest 10-12 hours, to get 30 minutes of activity a day. If that’s where you are, it’s ok.

Our limits need to be respected, to maintain a stable baseline. Trust yourself. Protect your energy.

And…

2/
Understand that while your healthcare workers may say that they are trained to support you with post infectious illness and pacing…they are actually completely new to it and (hopefully) still learning.

And if they have never experienced #LongCovid or #MECFS themselves…

3/
Read 4 tweets
Jan 24, 2021
Precisely. This is how the PACE trial authors got away with harming patients without much in the way of repercussions professionally.

The harm was being reported. No one wanted to listen.
I would encourage everyone in research and healthcare, treating patients with complex chronic illnesses and/or chronic pain, or funding the research, to please read this.

You’ll learn a lot and you’ll understand why patients are constantly having to educate and advocate.
healthwatch-uk.org/publications/n…

I’ll share a few quotes from the publication above:
Read 15 tweets
May 2, 2020
Feeling really down lately. This illness really kicks you in the face some weeks.

It’s hard to have no answers when everything in your body seems to not be working. No medications. No cures. No understanding. No access to supports. No voices fighting for us...except us.
So many of us have lost so much to this illness.

Our health. Our beloved careers. Our financial security and independence. Friends. For some, their families. Freedom. Access to nature. Ability to be active. Recognition of our skills and accomplishments.
On top of everything, we have to adjust to a new normal of isolation and dismissal.

We are regularly treated as “less than” because of our illness. Like we are “just patients”, with little to offer the world around us.
Read 6 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

:(