If You’re Disabled by Migraine, Advocacy Isn’t For You Despite Demands for You to be an Advocate

Photo of me as a child water flowers, text overlay says “I was meant to live a life full of joy. My life is worth more than the advocacy you demand of my broken body.”

//CW – this post contains discussion and strong language related to suicide and suicidal ideation //

After having a month to really sit with my thoughts and allow myself an emotional breather from the absolute draining Summit and co-occurring migraine advocacy events, I am here to reflect on the absurdity of the representation we have decided is good enough.

Much of my reactions are to the Migraine World Summit and it’s failure to live up to their own promises, but the overall sentiment applies to organizations more broadly.

The Migraine World Summit advertises itself as a leader in education, featuring dozens of interviews every year with the leading experts in the field. Doctors and researchers from all over the world – all over a eurocentric view of the world I might add – participate in these interviews and we, as folks living with migraine are invited to learn everything from the basics of migraine to more complicated cases, new research areas, and some overlap of different comorbidities.

From a first glance, as a first time attendee, the Summit has a lot to offer. It can be an immersive experience opening up the world of options to you.

I think this is a critical point where the Summit pivots from being useful to being a slap in the face.

For those of us who are new, who are perhaps just getting over that hump where we’ve probably seen a few different neurologists, maybe even worked with a headache specialist, and have gone through the traditional trial and error of medications, suddenly there’s some considerations for our care plan that our doctors didn’t have time to discuss in our appointments.

We get the opportunity to learn about neuromodulation devices (very expensive and not covered by insurance) but a great addition to the migraine toolkit. We learn about the Allay Lamp and green light therapy. We learn about exercise and mindfulness and little lifestyle adjustments that may be critical to our care.

We get a basic introduction to other conditions that commonly occur with migraine and get to learn a little of the science behind why this may happen and what researchers are debating about.

But the reality is, these interviews, and those behind this organization comes from a perspective of people who’s migraine responded to treatment.

They got better.

They got their lives back.

They found a community of people who did the same.

But what about the rest of us?

The truth is, sitting through these interviews year after year after year, listening to experts who are inaccessible to the vast majority of the migraine population telling us what we have to do to manage our care and not progress into chronic migraine is exhausting and extremely damaging to my mental health.

Almost all of the talks are geared towards people who’s migraine exists teetering between episodic and chronic.

The advice?

If your migraine is beginning to interfere with your life, you should consider adding a daily preventative medication to your care plan.

There are entire talks dedicated to all the different things that can contribute to chronification.

As if we aren’t there yet.

Do you know who is the main audience for these kinds of events? Who is most desperate for information their doctor hasn’t already given them? Who may be crowdfunding to pay for the access passes because they are too sick to always be able to watch on the day the interviews go live?

People disabled by migraine.

People who are living with intractable migraine.

People who have a migraine attack or symptoms 31 out of 31 days every month.

People who may not have had a pain free day in decades.

I’ve watched over the last month as my friends have also slowly worked back up to their own full capacity, having to work through the same emotional toll I worked through.

These interviews are insulting.

These interviews are dehumanizing.

Experts keep highlighting that migraine is one of the leading causes of disability, but those same experts have absolutely nothing to offer us. They forget that we are even watching these videos to begin with.

We are the audience, but frankly the Summit has forgotten that.

We are teased, and perhaps tricked into investing money into this event with titles of talks like “Latest Strategies for Chronic Migraine Control” and “Finding Work That Works Despite Migraine” and “Understanding Treatment Failure and Options” and we believe that these talks are going to address the chronic and disabled population.

Last year, we had enticing topics like “Thriving Despite Migraine” and a whole host of videos titles implying new types of treatment approaches.

Why then do these videos not even discuss chronic migraine?

This year’s strategy for chronic migraine control discussion was actually a talk about preventing patients from ever having chronic migraine in the first place.

And we sit through these interviews hoping that an expert will drop just a smidge of information that is new to us. Praying that something innovative has come up and they’re finally sharing it with us. That maybe we might get an entire talk dedicated to how to live our lives when our pain is severe 24/7.

We don’t get that.

They sit back and finally offer a little advice, and the theme this year for those of us who are severely disabled? Be a fucking advocate.

Educate others.

Channel your pain into something productive that can help others NOT END UP WHERE YOU ARE.

I said this on my Patreon, but I thing it begs repeating here. Sitting through hours of these interviews makes me feel like I should be dead. It makes me feel like my life isn’t worth advocating for. It isn’t worth being catered to in educational settings. It isn’t worth finding experts who want to discuss MY quality of life. It isn’t worth having a segment or two about finding our own peace, highlighting patients who are disabled who are super sick, who do have multiple conditions, and sharing what it is that they do to feel worthy of being alive.

The Migraine World Summit actively makes me wish that I wasn’t alive. Because living in this severe amount of pain is not worth it and to be told to use the pain to be an advocate is insulting.

Where are the interviews with a social security representative talking about applying for disability?

Where are the interviews of various hobbiests who had to leave the workforce and are either making money with their hobbies or simply doing so for their own joy?

Where are the interviews explaining what prior authorizations are and how to navigate them?

Where are the interviews that cover socializing and navigating the world when an illness causes you to be isolated?

Where are any considerations and messages that our lives are worth a damn?

We’ll never get that because the Summit itself almost prides itself on being incredibly inaccessible and unwelcoming of people who actually have horrible fucking migraines.

Let’s talk about accessibility.

In the fall the summit sends out emails looking for volunteers, to the target audience of viewers. It sounds like such a wonderful thing to participate in. We’re disabled, we are often freelancers and there’s a lot of jobs that go in to making the summit happen each year. But they rely on volunteers to do this work.

They also send out quite the statement saying we shouldn’t apply if our migraines may interfere with it.

So despite an interview here and there discussing workplace rights and accommodations we can ask for, the Summit itself will not provide those accommodations and is discriminatory right up front as to what kind of people they want volunteering. Reliable, able-bodied people who can afford to take on unpaid work.

The Summit is almost completely virtual, and takes place during the work week, so for most people the only option is to pay for an Access Pass so they can catch up on their own time, or compromise their personal time and likely interrupt their sleep to catch it once they get off each night.

Of course, that centers those who work.

Many of us in attendance are quite ill. Even if we do work part time, watching videos back to back is quite the strain on our migraines. Some days our attacks may be too severe for us to watch. Forcing us to pay for our access.

Of course, the Summit has been asked multiple times on twitter about case by case accommodations for people who really really wanted to catch an interview, but are having a horrible attack. And they want to know if there’s anyway they can have access to it outside of the 24 hour “free viewing” window. To which, migraine sufferers are being directed to purchase the access pass.

Access Pass is really an appropriate name, asking disabled and chronically ill people to you know, pay for their access.

It’s four or five interviews each day, only available for 24 hours, for eight days in a row. Surely at least 2-3 migraine attacks will occur during this time for each viewer.

You really only have to take half a glance at the audience and the subject being discussed to know that.

My disability check is $777 a month. The Summit costs $99 – $269 if you want to ensure access to it.

Getting disability for migraine is actually really hard.

I guess that’s one reason they don’t really cater to us in any of the interviews, because it’s really hard for us to pay 10-20% of our monthly income to an educational summit.

Which, kind of conflicts with a statement on their About Us page:

We believe that by giving unprecedented access to many of the world’s top experts you’ll get high quality, trustworthy information which you can discuss with your health care professional and use to improve your own situation for the better.

Migraine World Summit

The Summit is inaccessible.

Their “access” is a lie.

And we can get even further into the nitty gritty details of access that they advertise.

Closed captions was a great one.

They really made quite the effort this year and disclosed that after doing all this work, they weren’t able to guarantee that every video would have closed captions.

But that is totally okay because they have TRANSCRIPTS!!!

Oh.

They do have transcripts*

*transcripts are available to download with the purchase of an Access Pass.

Accessibility doesn’t get to live behind a paywall. But at the Migraine World Summit, it does.

And it got even better in terms of basic accessibility standards that should be available as a standard:

When the Summit came to an end, we all got one more email enticing us to open up our wallets.

Last year, many of you asked for shorter videos that are more uniform in length to help you plan your viewing time. In response, we edited 2021 interviews to a uniform length of 30 minutes each. However, 14 of our 32 Summit interviews had to be shortened to fit into this timeframe, which resulted in some difficult decisions about prioritizing content. While many of you enjoyed the condensed format, others requested more information and discussion with these amazing experts.

We’re thrilled to tell you that we’re releasing 14 special Extended Edition interviews with bonus content from the original full-length interviews at no extra charge to anyone who has ordered a copy of the 2021 Migraine World Summit. The package includes:

14 full-length interviews
Approximately 3 additional hours of new, original footage that didn’t air during the live event
Uncut and unedited interviews
No extra cost for existing or new Access Pass holders.

Please note: transcripts and closed captions are not provided for the Extended Edition Interviews.

Not only did the totally accessible “You can watch the Summit for FREE everyday” scheme lie to us by not releasing full expert interviews, but the full expert interviews are behind more paywalls, are not transcribed OR have captions.

How much critical information was completely withheld from the public and paywalled?

Migraine and Headache Education should not be like this.

This is unacceptable.

Many of us, myself included forced myself to sit through as many interviews as possible hoping for any glimpse of hope that may help me BE A LITTLE LESS DISABLED and was left wanting to die, feeling unconsidered and left behind by this community, with a message to just be an advocate.

Fuck, and I cannot emphasize this enough, YOU.

Fuck you for making me and my friends feel like this.

Fuck you for thinking any of this acceptable.

Fuck you for abandoning the portions of the migraine community that needs you the most.

You got the chance to get better. You got your remission. Why have you decided to turn around and forget about those who aren’t there yet?

Who might never get there.

The numbers regarding suicide and ideation vary with chronic pain, but it’s roughly 1 in 5.

The Migraine World Summit is partially responsible for those who do kill themselves.

Because the overwhelming response that I see from people with similar disease burden as myself, is that one of the biggest reasons they need to be in therapy is because of events like this. Because of the advocacy that does exist. Because of migraine organizations.

People are going to therapy citing migraine organizations, advocates, and educational events as the reason they are going.

Sit with that.

People want to die because they are in so much pain, and all you can do to is ignore us and tell us that the only option for people like me is to be an advocate.

I hope you rot.

Sincerely.

And to all my fellow disabled, severely chronic, way beyond episodic migraine folks out there, I see you.

You deserve unrelenting joy.

You deserve people who allow you to rest and figure out what it is in this life that you actually want, because constantly pursuing treatment that isn’t working isn’t the answer forever.

It is okay to stop your treatment or take a break from the tests and the bloodwork and the fad diets and the 18 pages of journaling every night.

It’s okay to decide that this year you want to have a garden and tend to it. And that you want to focus on finding joy as you cook again. That perhaps you want to find little moments with loved ones and adaptations for activities that you can participate in without being pain free.

It’s okay to tune out the constant cure noise.

It’s okay. You deserve a break.

You are allowed to rest. You are allowed to look for a community that isn’t the migraine community. You are allowed to say that this advocacy shit was never something you signed up for.

Perhaps you are more suited to be an ice cream advocate. You can cheer on the ice cream truck. You can invite your friends to grab some ice cream with you. Or sit in a quiet corner with someone you love as they bring you ice cream because it dulls the stabbing pain just a little. Advocate to take your kids for an extra special treat.

You do not have to put your personal medical history on display because that’s all migraine advocacy organizations think you are worth.

You are worth so much more, no matter how you choose to move forward.

A.

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