Welcome to the homepage for the #MigraineChat Twitter chat. This monthly chat will take place the first Monday of each month from 1-2pm eastern time. The goal is to cover topics that resonate with those with migraine disease.
#Migrainechat was previously hosted by Anna Eidt. With her blessing, I’m re-launching the chat and partnering with my fellow My Chronic Brain editors to reach those who might benefit most from camaraderie and sharing information about a range of migraine-related topics.
I have a few chats planned already, but if you have topic ideas, please feel free to
share them in the comments below and join us over on Twitter each month.
Follow me: @beth_morton
Follow MCB: @MyChronicBrain
Do you want to receive chat reminders (or would you like to opt out)? Click here
Chat Topic & Questions:
Questions will be posted a few days before each chat so that you’ll have time to prepare your tweets in advance if you want. Check back around the Friday before each chat.
June: “Migraine & Headache Awareness Month: Addressing Migraine Stigma”
The chat on Monday, June 3rd, will cover the topic of migraine stigma. This is a complex topic I won’t begin to try to fully explain in this blog. However, here is a *very* short primer. “Stigma is a social construct that uses prevailing cultural attitudes to label individuals with adverse attributes and results in stigmatized individuals losing access to social, economic, and political power.” (Parikh & Young, 2019) Stigma can come from various sources: internalized stigma, public stigma, and structural stigma.
- Internalized stigma occurs when people with migraine believe these adverse attributes and stereotypes about oneself.
- Public stigma is the social conditions and cultural norms that reduce our well-being through comments within the social sphere (i.e., what people say to us) or pervasive beliefs that migraine is not a real disease.
- Structural or institutional stigma includes the laws, policies, and other systemic biases and embedded organizational cultures preventing migraine from receiving the resources and respect it should be afforded given is seriousness.
Stigma can affect all of our relationships: personal and professional, as well as access to health care, education, housing, and more. Studies have shown that people with chronic migraine experience more stigma than both those with episodic migraine and other chronic neurological disorders.
The June chat questions include:
- Q1. Because of your #migraine disease, have you ever been treated differently at work, school, or by a healthcare professional? Can you share your experience? #MigraineChat
- Q2. When you think about how #migraine is portrayed by the public – in the media, in ads, etc. – what comes to mind? Do those images affect how you talk about migraine disease with friends and family, employers or co-workers? #MigraineChat
- Q3. Do you ever engage in negative self-talk when you have a #migraine attack? What are some examples? Where do you think it comes from? #MigraineChat
- Q4. What can we do individually or collectively to reframe this negative self-talk or blame during a #migraine attack? #MigraineChat
- Q5. How intentional are you with the language you use to describe #migraine: e.g. do you say you are having a migraine attack vs. migraine or migraine headache? Do you explain your word choices or let others pick up on it? Is shifting language important? Why? #MigraineChat
- Q6. Do you have a better sense of how stigma affects our lives with migraine? Can you think of ways that patients, advocates, doctors, and/or researchers can continue to address stigma and the barriers it presents? #MigraineChat
Are you newly diagnosed? We’re here to help! Have you had migraine for years or been chronic for quite some time? Join the chat each month to share your experiences and learn some new tips!
Tweet Chat Helpful Hints & Ground Rules:
1. Introduce yourself! At the start of each chat, share where you are joining from (if you’re comfortable doing so) and maybe a fun factoid.
2. Include the #migrainechat hashtag in every tweet. This makes the tweets easy to follow. You can do this a few ways:
- Open a Twitter browser, then enter #migrainechat in the search window. Once the results come up, click “latest” to see chat tweets in reverse chronological order. Keep refreshing your browser.
- Alternatively, consider using a site like Tweetdeck, Hootsuite, or TweetChat.
3. To keep things clear, use a Q1/A1 format for your tweets. For example, when we tweet our question Q1, you’ll start your responding tweet with “A1: ….” If your response requires multiple replies, you can use something like A1.a, A1.a, A1.c, etc., numbering or thread your responses.
You can also quote tweet our question with your response. Don’t forget the #migrainechat hashtag (even if quote tweeting)!
4. You don’t have to answer every question. Contribute wherever you are comfortable.
5. We value interaction. Read, reply, like, engage with, and retweet others’ responses. We want this to be a chance to share and learn.
- Retweet responses that resonate with you to share with your own followers.
- If you know of relevant resources or articles, add references.
- Take time to reply to others’ responses. For example:
6. With all that said, please remember to:
- Be respectful of others’ experiences. We each experience migraine differently.
- Be gentle with unsolicited advice.
- Topics may cover products and services that help manage life with migraine. Sharing is encouraged. We just ask that you refrain from using the chats to sell your personal products.
- Give proper attribution to retweets (e.g., quote tweet or use RT and original @handle).
7. Use these chats as an opportunity to find and follow new people!
8. Last, but not least, you may want to tweet out to your followers a high tweet volume warning. That allows them to join us if they are interested or mute our hashtag, if not (whomp, whomp). For example:
That’s it! Mark your calendars and prepare for the social event of the month every first Monday!
TweetChat Transcripts (also available here as PDFs)
December 3rd Tips for & Needs of the Newly Diagnosed (Chronic) Migraine Patient
January 7th What to expect during a Headache Specialist appointment
February 4th Self-Care as Part of Your Migraine Routine
March 4th Navigating Work with Migraine
April 1st Social Media & Migraine: Positives & Pitfalls
May 6th Migraine-Friendly Hobbies & Activities
June 3rd Migraine & Headache Awareness Month: Addressing Migraine Stigma
