The chronic condition community on Twitter has changed my life. I’m worried about what will happen without it.
Ever since Elon Musk took ownership of Twitter and renamed it X, the social media platform’s halting march toward death seems a foregone conclusion.
As a disabled person and a longtime Twitter user, I worry about how this will affect my community.
I fear many of us are losing a valuable digital gathering space and resource, one that isn’t easily replicated elsewhere.
Like many chronically ill people, I found not only community but also concrete advice on Twitter. I found advice from peers about symptom relief tips, how to deal with insurance, and which questions to ask the pharmacist.
Access to the chronic condition community on Twitter has made my life easier. It can be an oasis of respite when our bodies and the healthcare system betray us.
Online disabled and chronically ill communities are invaluable resources that take a long time to build and are hard to replace. As Twitter falls into disrepair, we’re losing all of that. It’s unclear when and how we might regain a space like it again.
Over the years, Twitter has been incredibly helpful to me as a disabled person and as a patient. #MigraineChat has been particularly valuable. I’ve encountered conversations with the hashtag from across Twitter’s nearly 20-year history that I still reference.
This area of Twitter is mostly a community of patients helping patients, regular people helping each other, person to person. We bounce ideas around for practical day-to-day tips, like what to eat when we have nausea for days and still need nutrients.
Twitter is how I learned that I didn’t have to be weighed every time I went to the doctor.
That’s why it’s frustrating that at a time when many of us feel especially vulnerable, one of the richest men in the world is seemingly dismantling this valuable resource, whether intentionally or otherwise.
Verification, once a way to distinguish notable accounts like celebrities, government entities, journalists, and doctors, has been sold to users for just $8 a month. Now, we cannot tell whose voices are being prioritized for pay. Key functionalities of the site are also in the process of shutting down. Some are already gone.
Twitter has created chronic condition communities that have become invaluable. These are places where people have gathered in smaller communities to share useful information.
Now, due to the changes I’ve mentioned and others, the Twitter we knew, and need, is diminishing.
More and more users are jumping ship or spending less time on the platform. The reduction of safety methods, paired with the rise in hate speech on the site during Musk’s ownership, makes the platform feel less helpful and more dangerous.
Within the disability and chronic illness community, there are many dedicated online forums and apps. While those have their benefits, they also have their drawbacks.
For example, many are specific to certain conditions. People with overlapping conditions and comorbidities have to join multiple forums and platforms. This can make it difficult to keep up with several concurrent conversations.
If someone asks a question that cuts across multiple conditions like, say, migraine and POTS, Twitter was once a great place to get an answer from any one of the many people who have both.
On a general-purpose platform like Twitter, people can stumble into a community they didn’t even realize they needed.
Both online and in real life, I’ve had conversations with people who assumed they didn’t have migraine because of common misconceptions, like they don’t experience head pain itself or they feel like their episodes “aren’t bad enough” to be related to migraine.
With Twitter, it was common to stumble across a conversation already in progress, read something that resonated, then click to see more or ask a question.
On a platform like Twitter, someone can casually throw out these questions into the ether and get a response from people who have lived with these conditions for decades, alongside researchers, clinicians who treat patients, and patient advocates, all speaking from their own experiences.
Many times, the Twitter world has informed me about something before my doctor did.
For example, I had no idea that if there’s a gap in your prescriptions, you can often ask your pharmacist for a few pills to hold you over while you wait for the logistics to get sorted out. This has saved me from being without my medication several times.
At other times, folks on Twitter have helped me figure out a solution before my doctors have. For example, at one stage, I started experiencing intense, acute acid reflux for the first time in my life. I had no idea what was going on, and it was incredibly painful.
I mentioned it on Twitter. Folks told me it might be because I took so many pills close to bedtime. I told my doctor this, who confirmed that was likely the issue.
I started taking my pills a little earlier and drinking a lot more water with them. My acid reflux resolved.
This may seem like a relatively small thing, but it was keeping me up an extra hour or two, several nights a week. And, as my headache specialist had already warned me, sleep disruption can affect migraine.
While I never take medical advice from Twitter without fact-checking, I do treat the platform as a starting point for research, getting ideas for questions to discuss with my doctor.
I’ve often found that folks on Twitter generally aren’t sharing medical information. Instead, they’re sharing ideas about how to live daily life with a disability or chronic illness.
I’ve learned helpful terms from my online peers to put words to my own experiences. I’ve always felt it’s hard to think when I have a migraine episode, but I didn’t have a good word for it. Twitter is where I first heard the term “brain fog” applied to migraine.
Since then, I’ve seen many conversations about what exactly that term means in this context and whether it’s a good idea to use it.
I still don’t know a better term to use, and the reality is that this neurological condition does impair my mental processing substantively. So, for now, it’s the best term I have to explain that particular symptom.
Often, conversations on Twitter help me better understand concepts my doctors only have time to briefly mention. One of my neurologists explained that migraine is not just a headache but an attack, and during a migraine attack, there is often a whole suite of symptoms.
Through asking questions and sharing resources on Twitter, I’ve learned more about concepts like prodrome and postdrome symptoms. This has helped me better understand my migraine episodes and recognize when one is coming.
Now, different platforms are fighting to be the next Twitter, to emerge as the dominant social media space to share our thoughts, resources, and experiences. I genuinely hope those of us with chronic conditions find space for these conversations on one of them.
I worry that without a common space, these communities we’ve worked hard to build will splinter among many platforms.
When there is no longer one town square of the internet to visit for breaking news or to connect with others, conversations will be further fractured and information may become harder to find.
Online communities are so valuable, especially for those of us with chronic health conditions and disabilities. As we watch this longstanding one crumble bit by bit, I still believe we can find new spaces to build these communities again.
Fact checked on October 10, 2023
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