#migrainechat Transcript
Healthcare social media transcript of the #migrainechat hashtag.
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See #migrainechat Influencers/Analytics.
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 | Beth Morton @beth_morton Less than two hours until #MigraineChat begins! Are you joining today? This month we discuss #chronicillness over the holidays. We have a special co-host, Brianne (@bennessb)! Take a look at today’s questions here: https://t.co/Wuemu2Ihop |
 | sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Less than two hours until #MigraineChat begins! Are you joining today? This month we discuss #chronicillness over the holidays. We have a special co-host, Brianne (@bennessb)! Take a look at today’s questions here: https://t.co/Wuemu2Ihop |
| Beth Morton @beth_morton @bennessb Hello! I hope you are having a low-symptom day and can join #MigraineChat today in about 90 mins! @Gotwhaleofatale @DivaMDGarrett @Alexandria_SZ @MigraineMantras @aimee1002 @elxtric_emily @hincmanlorie @CdnPenny @migrainekrista |
| sick lately, words bad (check 📌 for discord info) @bennessb This month's #MigraineChat gets started in about five minutes! I am currently bundled up in multiple blankets and hiding from the snowstorm, but I am very ready to talk about navigating the holidays with chronic illness. |
| Beth Morton @beth_morton Hello everyone! Welcome to #MigraineChat! Thanks for being here today. I hope you’re doing as well as possible. If you haven’t before, take a quick moment to review the chat tips & guidelines: https://t.co/Wuemu2Ihop |
| Beth Morton @beth_morton Two tips: (1) I’ll start each question w/Q1, Q2, etc. Remember to start your corresponding reply w/A1, A2, etc. (or quote tweet). (2) *Always* remember the #MigraineChat hashtag! It makes following the conversation easier & ensures your tweets make the transcript. |
 | Migraine, Chronic Illness, Mental Health @MigraineMantras RT @beth_morton: Hello everyone! Welcome to #MigraineChat! Thanks for being here today. I hope you’re doing as well as possible. If you haven’t before, take a quick moment to review the chat tips & guidelines: https://t.co/Wuemu2Ihop |
| Migraine, Chronic Illness, Mental Health @MigraineMantras RT @bennessb: This month's #MigraineChat gets started in about five minutes! I am currently bundled up in multiple blankets and hiding from the snowstorm, but I am very ready to talk about navigating the holidays with chronic illness. |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Hello everyone! Welcome to #MigraineChat! Thanks for being here today. I hope you’re doing as well as possible. If you haven’t before, take a quick moment to review the chat tips & guidelines: https://t.co/Wuemu2Ihop |
| Beth Morton @beth_morton Who is joining #MigraineChat today? If you want, introduce yourself in a way you are comfortable. I’m Beth, tweeting from snowy Vermont and trying to fight off another #migraine attack. #MigraineChat https://t.co/Iq0jLY3OVf |
| Beth Morton @beth_morton Co-hosting #MigraineChat with me today is Brianne Benness (@bennessb), who hosts the podcast “No End In Sight” and has written extensively on the topic of #chronicillness. It’s a pleasure to have her joining us today! |
| sick lately, words bad (check 📌 for discord info) @bennessb Hi, I'm Brianne! I interview folx with chronic illness (incl. migraine) on my podcast No End In Sight (https://t.co/u4qnWPU4xT) & I've started collecting personal essays about illness too. (https://t.co/pag40rtUR7) I've got SFN & POTS & am still investigating. #MigraineChat |
| Beth Morton @beth_morton A few standing reminders. This #MigraineChat is purely informational. Nothing shared should be considered medical advice or a substitute for talking with your doctor. |
 | Rebecca @PyesMusings @beth_morton Rebecca from the DC area, also fighting off an attack. (Mute #migrainechat if you don’t want to see a bunch of migraine tweets, or follow/join if you do) |
 | Amy Ferraro-Kick ED’s Butt @acf1973 Hi Amy from NJ. #MigraineChat |
| Beth Morton @beth_morton Also, Twitter is a public forum and we are discussing health-related topics. Share only what is comfortable for you. #MigraineChat |
 | Ody @OdyO11 @beth_morton Hi, I'm from Europe and decided to keep it a bit anonymous on twitter. I have EDS, CCI, MCAS, mild tetraplegia etc. What was thought to be migraines now seems to be a result of my craniocervical instability. #MigraineChat |
 | Sari C Mauro @ArchivistSariM @beth_morton Sari from Boston, currently on my lunch break and trying to manage pain levels. Probably mostly lurking for today's #MigraineChat |
| Beth Morton @beth_morton There have been some wonderful conversations on Twitter lately about how to have constructive conversations about #chronicillness with friends and family. With the holidays, I thought this might make for a useful #MigraineChat topic. |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: There have been some wonderful conversations on Twitter lately about how to have constructive conversations about #chronicillness with friends and family. With the holidays, I thought this might make for a useful #MigraineChat topic. |
| Beth Morton @beth_morton Q1. Do friends/family members ask about your health at holiday gatherings? How does it make you feel? How do you respond? #MigraineChat https://t.co/v51cQoJgn0 |
| sick lately, words bad (check 📌 for discord info) @bennessb A1. My health has fluctuated pretty wildly over the last few years, so I get asked about it a lot over the holidays. I try and stick to facts & new developments, because getting into the emotional/social side is too much. But still, I feel like a broken record. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Q1. Do friends/family members ask about your health at holiday gatherings? How does it make you feel? How do you respond? #MigraineChat https://t.co/v51cQoJgn0 |
| Ody @OdyO11 @beth_morton A1. I don't mind people asking. My family isn't that big, so people know about my health and care. I am lucky that way. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @OdyO11 @beth_morton There's such a big difference between talking about it with people you see semi-regularly and people who are basically getting the whole story for the first time. #MigraineChat |
| Amy Ferraro-Kick ED’s Butt @acf1973 Family ask and it does not bother me because it just shows they care. I am very open. #MigraineChat |
 | Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: There have been some wonderful conversations on Twitter lately about how to have constructive conversations about #chronicillness with friends and family. With the holidays, I thought this might make for a useful #MigraineChat topic. |
| Beth Morton @beth_morton @DreadfulSanity I'm sorry. That's really unhelpful and, I'm sure, really untrue. #MigraineChat |
| Rebecca @PyesMusings @beth_morton A1. Yes, and depends on the family member. My immediate family gets it; others not so much. Regardless, I generally have a rote emotion-free response that I give everyone who’s close enough to not just get a “fine, and you?” #MigraineChat |
| Rebecca @PyesMusings @beth_morton A2a. Current response is “way better than last year, but I have to keep reminding myself I’ve gone from 2% to 20%, not 100%, so if I try to act like I’m migraine-free, I’ll get knocked on my ass.” (Managing expectations is rarely a bad idea). #MigraineChat |
 | Raven Mae @MaeNena73 @beth_morton @bennessb All the women on mom's side get migraines, so we talk about it. Dad's side doesn't care if I'm in pain so it never comes up. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @DreadfulSanity @beth_morton One thing I find so so frustrating about these kinds of comments from family is that it always seems to be from people who have never handled a health crisis themselves. They just want to *believe* that hard work will make our issues go away. #MigraineChat |
| Beth Morton @beth_morton @PyesMusings Yes! Managing expectations feels really important. #MigraineChat |
| Ody @OdyO11 @bennessb That's true - getting into the emotional/social side tends to overwhelm people. Also, while talking about facts and developments isn't emotionally straining for myself, talking about the emotional/social side would be, so I want autonomy in deciding when to do so. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @PyesMusings @beth_morton This year is the first time I've thought about putting together an illness elevator pitch, but I'm so inspired by the examples people give for talking about this stuff. #MigraineChat |
| Beth Morton @beth_morton @bennessb @PyesMusings Oh, I love this idea! #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @Alexandria_SZ @beth_morton A weird thing for me is that I sometimes feel frustrated when people never ask about my health but also when people ask about it all the time. I wish people understood that it's a big part of my life but it's also not the most interesting thing about me. #MigraineChat |
| Beth Morton @beth_morton Q2. Do your friends and family members have a good understanding of #migraine disease or your other #chronicillness and how these affect you? Do they understand the nature of “chronic” illness? #MigraineChat https://t.co/a5vi8FYDaD |
| Ody @OdyO11 @bennessb @beth_morton Definitely, yes! It takes time and practice for people to become truly supportive and understanding. #MigraineChat |
| Rebecca @PyesMusings @bennessb @DreadfulSanity @beth_morton The just world fallacy. “I know this is uncomfortable to hear, Brad, but even if you follow all the rules, you may one day get really sick and stay that way. Happy holidays!” #migrainechat |
| sick lately, words bad (check 📌 for discord info) @bennessb A2. For the most part, no. I feel like I have the same convo over & over about how people think that I look "better" & that this must be a good sign. I hate feeling like a downer when I try to add nuance here, but it does me no favors to agree w/ that narrative. #MigraineChat |
| Beth Morton @beth_morton @MissDS17 Ugh, I just audibly sighed. I feel this. I'm sorry. There's so much stigma around #migraine. #MigraineChat |
| Ody @OdyO11 @beth_morton A2: I think their understanding of my chronic illness is incomplete. But they care, and they try, and it's okay if I say I need a break. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Q2. Do your friends and family members have a good understanding of #migraine disease or your other #chronicillness and how these affect you? Do they understand the nature of “chronic” illness? #MigraineChat https://t.co/a5vi8FYDaD |
| Amy Ferraro-Kick ED’s Butt @acf1973 A2. They definitely don’t understand it but will ask about it. They don’t understand the sleeping all the time and the constant pain. #MigraineChat |
| Rebecca @PyesMusings @fabriKatie Oh, I struggle with that at work! I want to be like “yeah I’ve got chronic daily migraine but I’m still reachable and working,” so people take me seriously, but at the same time I don’t want people thinking “oh, it must not be so bad after all.” #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q2. Do your friends and family members have a good understanding of #migraine disease or your other #chronicillness and how these affect you? Do they understand the nature of “chronic” illness? #MigraineChat https://t.co/a5vi8FYDaD |
| sick lately, words bad (check 📌 for discord info) @bennessb @OdyO11 @beth_morton I'm also really aware now that *my* understanding changes a lot, sometimes daily or weekly. So I get that it's not possible for people to totally keep up. #MigraineChat |
| Ody @OdyO11 RT @bennessb: @Alexandria_SZ @beth_morton A weird thing for me is that I sometimes feel frustrated when people never ask about my health but also when people ask about it all the time. I wish people understood that it's a big part of my life but it's also not the most interesting thing about me. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @acf1973 This is one of those places where I really really wish we had better media representation. It would be such a gift if family & friends knew that "sleeping all the time" does not automatically mean lazy. #MigraineChat |
| Rebecca @PyesMusings @beth_morton Close family and friends, yes; others less so. #MigraineChat |
| Beth Morton @beth_morton @bennessb @Alexandria_SZ I've been saying this *exact* thing a lot lately! Like you read my mind. Or never ask vs. ask about it in really inappropriate ways. And yes, there's more to me that "how I'm feeling" or "what I've tried lately." #MigraineChat |
| Ody @OdyO11 @bennessb @beth_morton That's true. And also there are good days and bad days, so I need different accommodations on different days. This is sometimes hard for others to understand who mean well and who'd like to look after me. It's not easy for them, either. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @fabriKatie I also find it so hard to explain to other people that they might never get to the bottom of it, when that's something that I have to reckon with myself. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @OdyO11: @bennessb @beth_morton That's true. And also there are good days and bad days, so I need different accommodations on different days. This is sometimes hard for others to understand who mean well and who'd like to look after me. It's not easy for them, either. #MigraineChat |
| Beth Morton @beth_morton Q3. If you require accommodations or have limitations because of #migraine or #chronicillness, are friends and family understanding of these? How do you share your needs with them? #MigraineChat https://t.co/KZ0JcS6rrG |
| sick lately, words bad (check 📌 for discord info) @bennessb A3. I need gluten-free food (usually no problem), I sometimes need to take lie-down breaks (which make me self-conscious, but nobody says anything), and I'm a lot less helpful than I used to be because standing can be tough. I usually feel the worst about that one. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A3 cont'd: Except for food stuff, I'm usually pretty quiet about this. If necessary, I'll tell the host what's up, but I rely really heavily on my spouse to help me find a quiet spot, to pick up any help-related slack, & to keep me company if everyone is standing. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Q3. If you require accommodations or have limitations because of #migraine or #chronicillness, are friends and family understanding of these? How do you share your needs with them? #MigraineChat https://t.co/KZ0JcS6rrG |
| Rebecca @PyesMusings @beth_morton A3. When we visit my immediate family, they pitch in with the kids, give me time to lie down if I need to, and don’t expect me to do much in the way of chores, and—critically—they’re totally chill and non-blamey about it. #MigraineChat |
 | LouEvlalia @LEvlalia Yes! I wrote/rehearsed one that gives enough information without inviting suggestions and ends expectations that I'll be "getting better" soon. #migrainechat |
| Rebecca @PyesMusings @beth_morton A3a. My internalized ableism is actually confounded by that situation. With others, I communicate what I can and can’t do; some of them clearly think I’m just a lazy hot mess and I put that in a not-my-problem box and just maintain my boundaries. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @PyesMusings @beth_morton Non-blamey is so so important! #MigraineChat |
| Rebecca @PyesMusings @beth_morton A3b. The IRL friends that aren’t ok with my unpredictable availability dropped off the radar years ago, so the couple I’ve got left are great and get it. #MigraineChat |
| Ody @OdyO11 @Alexandria_SZ @beth_morton So many people seem to be under the illusion that everything you don't die from can be healed. And the narrative that it's possible to keep oneself healthy by doing sports and eating healthy adds to the stigmatization of those with chronic illness. #MigraineChat |
| Amy Ferraro-Kick ED’s Butt @acf1973 A3. I sometimes have memory loss with my migraines and it is so hard for the family to understand this. It is easier for them To understand the physical limitations and the need to walk with a cane or use a wheel chair. #MigraineChat |
 | rebecca @blueraccoon A2: Most of my people get that #migraine attacks can leave me incapacitated. What most of them *don't* get are all the times I have to baby my head and be super careful. Often when I decline invitations it's not bc I have a migraine attack but bc I'm afraid of one. #MIgraineChat |
| Beth Morton @beth_morton @Alexandria_SZ @PyesMusings @fabriKatie I struggle with this, too, especially if this is the *only* time certain people see me. It's hard to represent our day-to-day symptoms when we are trying our best to be present for a specific event. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q3. If you require accommodations or have limitations because of #migraine or #chronicillness, are friends and family understanding of these? How do you share your needs with them? #MigraineChat https://t.co/KZ0JcS6rrG |
| Ody @OdyO11 @beth_morton A3: They understand by now. I tell them what needs I have. It was more complicated in the beginning, when they had their expectations and were disappointed. These emotions were difficult to deal with for both them and me. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @blueraccoon oooooh I really relate to this! I make so many choices to prevent crashes and I feel self-conscious to be staying home when I feel "fine." #MigraineChat |
| Rebecca @PyesMusings @Alexandria_SZ @bennessb @acf1973 Yeah. Even my spouse often seems to think that lying down=lounging around eating peeled grapes while he does all the work. He is doing all the work, which I appreciate, but I’m in agony, so not necessarily getting the long end of the stick #migrainechat |
| Beth Morton @beth_morton @Alexandria_SZ @PyesMusings @fabriKatie They don't see what I deal with the rest of the time, so I feel like they don't believe I'm really sick. #MigraineChat |
| Beth Morton @beth_morton @blueraccoon Oooh, yes, this! I'm either having a #migraine attack or trying to avoid one, so I'm always on high alert. #MigraineChat |
| rebecca @blueraccoon A1: No one actually asked about my health at Thanksgiving and I'm glad for it, as it's mostly depressing these days. People react weirdly when you explain that you have chronic *intractable* migraine and no, it won't ever go away. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @OdyO11 @beth_morton So. Many. Emotions. surface when navigating this stuff during family gatherings etc. Sometimes I feel like I'm just taking breaks from managing other peoples' reactions to my heath. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @deannejello @beth_morton I feel like we need to normalize new conversation starters that are not health-related, just to work around this problem. #MigraineChat |
| Beth Morton @beth_morton Q4. When meeting new people, when and how do you bring #migraine or your other #chronicillness into the conversation? #MigraineChat https://t.co/52h7qJvUDa |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @blueraccoon: A2: A2: Most of my people get that #migraine attacks can leave me incapacitated. What most of them *don't* get are all the times I have to baby my head and be super careful. Often when I decline invitations it's not bc I have a migraine attack but bc I'm afraid of one. #MIgraineChat |
| Rebecca @PyesMusings @blueraccoon I have a whole-ass doctor who doesn’t get this. (Not my neuro, thankfully). “Do you let your neuro know when you have a migraine? Why not?” Every time I see him. The neuro doesn’t need to hear from me every day, fuck offfff. #migrainechat |
| sick lately, words bad (check 📌 for discord info) @bennessb A4. When I'm more symptomatic I tend to avoid talking to new folks because it uses too much energy 🤷🏻♀️. But I find myself talking about chronic illness A LOT more w/ new folks in general because of the podcast. So I talk more about systemic stuff than my own health. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Q4. When meeting new people, when and how do you bring #migraine or your other #chronicillness into the conversation? #MigraineChat https://t.co/52h7qJvUDa |
| rebecca @blueraccoon @beth_morton I can usually tell when my head's going to be unhappy later and I have to be careful, which both sucks but also I appreciate because it means I know when to avoid things. The attacks that hit out of nowhere, though...can't do much. #MigraineChat |
| Ody @OdyO11 @beth_morton A4: Whenever there is a need for accommodations. I explain why I need these. #MigraineChat |
| Rebecca @PyesMusings @beth_morton A4. Only when it’s immediately pertinent, eg “I don’t drive much because I have chronic migraine with aura.” I did put it in my profile on a new meet-mom-friends app I’m trying, to avoid having to inform people later, and hopefully weed out people who can’t deal. #MigraineChat |
| Beth Morton @beth_morton @bennessb @deannejello Non-health, non-work. I like, "What have you been watching/reading?" or asking about hobbies. For friends with kids, I ask what silly stories they have. #MigraineChat |
| Amy Ferraro-Kick ED’s Butt @acf1973 A4. I usually don’t bring it up unless it needs to be brought up. I am open though when it is brought up. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @fabriKatie It is so hard to ask for accommodations when they themselves are a moving target! #MigraineChat |
| rebecca @blueraccoon A3: Most of my friends and many of my family have #chronicillness themselves, so we're generally pretty understanding of each other's limitations. My dad, though, doesn't entirely get how chronic #migraine works or how careful I have to be all the time. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q4. When meeting new people, when and how do you bring #migraine or your other #chronicillness into the conversation? #MigraineChat https://t.co/52h7qJvUDa |
 | Brianna or Bri @bnbthehugger RT @blueraccoon: A1: A1: No one actually asked about my health at Thanksgiving and I'm glad for it, as it's mostly depressing these days. People react weirdly when you explain that you have chronic *intractable* migraine and no, it won't ever go away. #MigraineChat |
| rebecca @blueraccoon A4: I try not to unless it's someone I've met *through* the #chronicillness community. Otherwise, again, I have chronic intractable #migraine and less success on #Aimovig than I used to have. People really don't know how to react. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @deannejello @beth_morton There definitely comes a point when it is not helpful or feasible to pretend to be healthy. (Although also some people can act entitled to details, which is its own issue.) #MigraineChat |
| Brianna or Bri @bnbthehugger RT @beth_morton: Q1. Do friends/family members ask about your health at holiday gatherings? How does it make you feel? How do you respond? #MigraineChat https://t.co/v51cQoJgn0 |
| Brianna or Bri @bnbthehugger RT @beth_morton: Q2. Do your friends and family members have a good understanding of #migraine disease or your other #chronicillness and how these affect you? Do they understand the nature of “chronic” illness? #MigraineChat https://t.co/a5vi8FYDaD |
| Brianna or Bri @bnbthehugger RT @beth_morton: Q3. If you require accommodations or have limitations because of #migraine or #chronicillness, are friends and family understanding of these? How do you share your needs with them? #MigraineChat https://t.co/KZ0JcS6rrG |
| Brianna or Bri @bnbthehugger RT @beth_morton: Q4. When meeting new people, when and how do you bring #migraine or your other #chronicillness into the conversation? #MigraineChat https://t.co/52h7qJvUDa |
| Beth Morton @beth_morton Q5. Is there anything you do before or after big holiday gatherings that helps you manage your symptoms? #MigraineChat https://t.co/dwwK1G1PnP |
| sick lately, words bad (check 📌 for discord info) @bennessb @fabriKatie Sometimes with strangers I also just appreciate having a break from talking about my health. I talk about it all. the. time. And that's my choice a lot of the time, but I still feel like people are sometimes afraid to ask me about anything else since I don't work. #MigraineChat |
| Ody @OdyO11 @beth_morton A5: I plan time to lie down and rest before and after. Generally I need to plan at least two days before and after which I spend in bed. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A5. This is something that I'm still figuring out. I definitely make an effort to rest before events (and my body makes me rest afterward). The harder part for me is figuring out boundaries about how much I can commit to so that I don't burn out mid-holiday. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Q5. Is there anything you do before or after big holiday gatherings that helps you manage your symptoms? #MigraineChat https://t.co/dwwK1G1PnP |
| LouEvlalia @LEvlalia Sometimes I feel/notice that my honest presence (in serious pain) makes people sad/upset. But also disappointed in me for not showing up, not sure what the balance is... #migrainechat |
| Amy Ferraro-Kick ED’s Butt @acf1973 A5. After a gathering, I need to sleep. I am so overwhelmed and usually have such a headache that I need to sleep it off. |
| Ody @OdyO11 @AlexVandermaas @bennessb @beth_morton Oh, I feel that. Isn't it weird how empathy works? Too little isn't helpful, but too much isn't, either... #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @blueraccoon: A3: A3: Most of my friends and many of my family have #chronicillness themselves, so we're generally pretty understanding of each other's limitations. My dad, though, doesn't entirely get how chronic #migraine works or how careful I have to be all the time. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @blueraccoon: A4: A4: I try not to unless it's someone I've met *through* the #chronicillness community. Otherwise, again, I have chronic intractable #migraine and less success on #Aimovig than I used to have. People really don't know how to react. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @rosiempatton71 This is something that I'm REALLY WORKING on setting boundaries around. I need to budget energy for conversations, even phone conversations. So I've been trying hard to reinforce that I need to plan for social interactions. #MigraineChat |
| Ody @OdyO11 @RayDaleyWriter @Alexandria_SZ @beth_morton There are so many invisible illnesses - and yes, they are even more at risk of being stigmatized. It can be quite exhausting having to explain all the time why health recommendations that are aimed towards healthy people won't work for you... #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @Alexandria_SZ So. Much. Easier. I started doing interviews 2 years ago and it has totally changed my perspective on illness. Hearing my own feelings & frustrations reflected back to me over and over again has been normalizing & validating. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @bennessb: @Alexandria_SZ So. Much. Easier. I started doing interviews 2 years ago and it has totally changed my perspective on illness. Hearing my own feelings & frustrations reflected back to me over and over again has been normalizing & validating. #MigraineChat |
| Rebecca @PyesMusings @Alexandria_SZ @fabriKatie Or not an unreasonable fear, anyway: people do get weird or hostile, and with a stranger you have no idea if they’re going to be one of those. #migrainechat |
| Beth Morton @beth_morton Q6. The holidays can be busy and stressful. What are some ways that family members and friends can support you during the holidays in particular (e.g., during a #migraine attack or #chronicillness flare or to prevent one)? #MigraineChat https://t.co/jEbhaTLfnt |
| sick lately, words bad (check 📌 for discord info) @bennessb @LEvlalia I really really wish we had social guidelines or etiquette rules or something about how to be symptomatic in front of other people. Because right now it feels like the only acceptable thing is to just not do that. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A6. A really big way for people to support me is to *believe me* about my limits. I feel like people personalize it whenever I opt out of things to rest, especially because my spouse is usually the only one who sees the consequences of not resting first-hand. #MigraineChat |
| LouEvlalia @LEvlalia 1. Seriously consider not going. 2. If I go, stuff pockets with meds/other helpful items. 3. Pad either end with a few days in bed 4. Make emergency escape plan with my partner 5. Never drink alcohol no matter how many times it's offered...#migrainechat |
| rebecca @blueraccoon A5: Thanksgiving is pretty much the big holiday gathering we do and we host, which I love doing. But it leaves me exhausted and I usually spend the next few days crashed out. It doesn't prevent the attack but it makes it less severe, anyway. #MigraineChat |
| Ody @OdyO11 @bennessb @Alexandria_SZ It's so important to find community. To understand that the way society and doctors react is not one's own fault, but that it's a systemic problem. To support each other and to help each other to find ways to cope. I'm very thankful for that. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: Q6. The holidays can be busy and stressful. What are some ways that family members and friends can support you during the holidays in particular (e.g., during a #migraine attack or #chronicillness flare or to prevent one)? #MigraineChat https://t.co/jEbhaTLfnt |
 | I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @beth_morton: Q2. Do your friends and family members have a good understanding of #migraine disease or your other #chronicillness and how these affect you? Do they understand the nature of “chronic” illness? #MigraineChat https://t.co/a5vi8FYDaD |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @OdyO11: @Alexandria_SZ @beth_morton So many people seem to be under the illusion that everything you don't die from can be healed. And the narrative that it's possible to keep oneself healthy by doing sports and eating healthy adds to the stigmatization of those with chronic illness. #MigraineChat |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 This. |
| Ody @OdyO11 @beth_morton A6: I need a place where I can sit or lie down immediately when necessary. When I have a migraine attack, I need a quiet place to rest. My family then needs to suppress the urge to ask if they can bring me anything, which isn't easy for them. #MigraineChat |
| Amy Ferraro-Kick ED’s Butt @acf1973 A6. Understand that I may need to sleep or miss a gathering because of my health. Be flexible. #MigraineChat |
| Ody @OdyO11 @beth_morton A6.2: It's not easy for my family that they can do so little to help. There's always the tendency to rather do something which isn't helpful than to not offer any help. Interestingly, I read a thread by a doctor today who felt the same way. #MigraineChat |
| Rebecca @PyesMusings @beth_morton A6. Most important IMO, and something everyone can do, is just be compassionate. Remember we’re used to feeling like, and being perceived as, burdens, and try not to add to either that feeling or that perception. #migrainechat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @PyesMusings: @beth_morton A6. Most important IMO, and something everyone can do, is just be compassionate. Remember we’re used to feeling like, and being perceived as, burdens, and try not to add to either that feeling or that perception. #migrainechat |
| Ody @OdyO11 RT @bennessb: A6. A really big way for people to support me is to *believe me* about my limits. I feel like people personalize it whenever I opt out of things to rest, especially because my spouse is usually the only one who sees the consequences of not resting first-hand. #MigraineChat |
| Beth Morton @beth_morton CT: Do you have any advice for people who are navigating the holidays with #migraine/#chronicillness for the first time this year? #MigraineChat https://t.co/3vezYx9Foq |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @beth_morton: CT: CT: Do you have any advice for people who are navigating the holidays with #migraine/#chronicillness for the first time this year? #MigraineChat https://t.co/3vezYx9Foq |
 | Jackie 💜🇵🇸🍉 @FassJef @beth_morton Jackie from Buffalo NY. Have been suffering from chronic migraine for 10 years now. Thankful to find a community like this. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb CT. Remember that other people's reactions to your health are not about you. If people don't believe you / try to minimize / give unsolicited advice / act like your needs are selfish / etc... they're telling you something about themselves. It's not about you. 💗 #MigraineChat |
| Ody @OdyO11 RT @bennessb: @LEvlalia I really really wish we had social guidelines or etiquette rules or something about how to be symptomatic in front of other people. Because right now it feels like the only acceptable thing is to just not do that. #MigraineChat |
| Rebecca @PyesMusings @beth_morton A6a. IOW, whatever you’re doing to help out, have a NBD attitude about it. Eg “it’s awfully loud in here with all the kids; do you want to take a break? We don’t both need to be minding them.” #migrainechat |
| rebecca @blueraccoon A6: Don't make a big deal out of my actually showing up, or my then leaving early. I know how often I've missed things, it does not make me feel great to have it pointed out. If I have an attack, you don't have to offer endless sympathy. Just say "That sucks." #MigraineChat |
 | Rachel Sussman @RachelxSussman @beth_morton A4 I’m pretty up front about it. It provides context and it assuages a lot of my guilt about being absent or inconsistent. (Even if other people don’t fully get it.) Plus, it often gives people an immediate safe space to talk about their health issues. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @BLS207 So tough! And sometimes it changes. Like the exact same commitment level might have no consequences, or mild consequences, or cause a full-on crash. #MigraineChat |
| Beth Morton @beth_morton RT @bennessb: CT. Remember that other people's reactions to your health are not about you. If people don't believe you / try to minimize / give unsolicited advice / act like your needs are selfish / etc... they're telling you something about themselves. It's not about you. 💗 #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @RachelxSussman @beth_morton yesssss, that last one is such a big thing! I hear so much more about what other people are going through now that I am so much more open about health stuff in general. #MigraineChat |
| Ody @OdyO11 @beth_morton CT: Communicate your needs. Your needs are more important than expectations others have of you. Try to enjoy the little things. And try not to be frustrated by people's frustrations. Ableism is a systemic problem. Build your support network of people who get it. #MigraineChat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @OdyO11: @beth_morton CT: @beth_morton CT: Communicate your needs. Your needs are more important than expectations others have of you. Try to enjoy the little things. And try not to be frustrated by people's frustrations. Ableism is a systemic problem. Build your support network of people who get it. #MigraineChat |
| Ody @OdyO11 RT @bennessb: CT. Remember that other people's reactions to your health are not about you. If people don't believe you / try to minimize / give unsolicited advice / act like your needs are selfish / etc... they're telling you something about themselves. It's not about you. 💗 #MigraineChat |
| Beth Morton @beth_morton Thank you, Brianne, for co-hosting today’s #MigraineChat. And thank everyone for joining us! Wishing you the best health possible over the upcoming holidays & I’ll see you in 2020! I’ll share some resources in the next tweet. That hour went fast, so feel free to keep tweeting. |
| Beth Morton @beth_morton @amfmigraine’s guide on #migraine conversations https://t.co/JFhpnHbDH1 The Migraine Warrior’s recent FB Live (@CheDeco) https://t.co/jC4ORNyGVY The folks @HealtheVoices just did a similar Twitter chat. Check out their feed and the #HealtheVoicesChat hashtag. #MigraineChat |
| Jackie 💜🇵🇸🍉 @FassJef @beth_morton A4. I have to be open because I am on disability due to migraine so when people ask “what do you do for a living?” Before I was on disability is usually would not bring it up. #migrainechat |
| Rebecca @PyesMusings @beth_morton CT: if you can, give people a rundown (in person, via email, whatever) of your limitations and variability, with whatever appeasing fluff they need; goal is not to have to repeat the full spiel in future years. #migrainechat |
| Rebecca @PyesMusings @beth_morton Eg “just a heads up, I have good days and bad days, but it’s likely I’ll be retreating to a quiet, dark room on occasion, especially if things are getting rowdy, not because I don’t want to spend time with you all, but because everything hurts too much.” #migrainechat |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @bennessb: @LEvlalia I really really wish we had social guidelines or etiquette rules or something about how to be symptomatic in front of other people. Because right now it feels like the only acceptable thing is to just not do that. #MigraineChat |
 | Sheridan Ruiz @sheridanruiz @beth_morton So grateful for this #migrainechat! A4. I most often bring them up to explain why I can't drink as much as everyone else at the party. I rarely bring them up if I need accommodations for them because 90% of the time I just get suggestions for how I can better manage them. |
| Rebecca @PyesMusings @beth_morton Thank you, Beth and Brianne! This has been really helpful for me, as always. #migrainechat |
 | Krista @Kristacatlady @beth_morton Can't believe I got the time wrong. I was thinking it was 1 pm central. So sorry. I am Krista, from the St Louis suburbs. #MigraineChat |
| Jackie 💜🇵🇸🍉 @FassJef @beth_morton A6. Being supportive is a huge thing for me. Also not making a big deal out of my absence and/or having to go lay down immediately because it’s already disappointing enough as is #migrainechat |
| Rebecca @PyesMusings @beth_morton A6b oh! And if you’re about to say “I’m sure people are suggesting treatments to you all the time, and you’ve probably tried them all, but” ...just don’t. They are, and we have, and you’re not the exception. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: CT: CT: Do you have any advice for people who are navigating the holidays with #migraine/#chronicillness for the first time this year? #MigraineChat https://t.co/3vezYx9Foq |
| Jackie 💜🇵🇸🍉 @FassJef @beth_morton A1. It is always the first thing people ask. I do wish someone would ask me something else but I do appreciate that they ask. It’s really hard to be known as the friend or family member with horrible migraines. It’s what I’m ”known” for. Ugh #migrainechat |
| Krista @Kristacatlady A1: I like it when people ask how I am. It feels weird and uncaring to me if they never ask. Depending on the person, I may disclose that I an getting worse, big usually I missed say I am hanging in there. #MigraineChat |
| Krista @Kristacatlady A1b: I know some me people dont know whether to ask or not, so if it is important to me, I just tell them it means a lot to me if they ask now and then. #MigraineChat |
| Krista @Kristacatlady @DreadfulSanity @beth_morton I an so sorry your family is not supportive. It is hard enough being so sick, but then to not have their support, it's painful. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: @amfmigraine’s guide on #migraine conversations https://t.co/JFhpnHbDH1 The Migraine Warrior’s recent FB Live (@CheDeco) https://t.co/jC4ORNyGVY The folks @HealtheVoices just did a similar Twitter chat. Check out their feed and the #HealtheVoicesChat hashtag. #MigraineChat |
| Beth Morton @beth_morton @migrainekrista Don't worry, we just wrapped up. I'm still catching up myself. Feel free to peruse the hashtag and respond to the questions now or when ever you feel up to it! #MigraineChat |
 | Dorothy Zbornak @KronicKronicles After today's appt with my GP I needed this reminder. Sharing in case someone else needs it too. #chronicillness |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @KronicKronicles: After today's appt with my GP I needed this reminder. Sharing in case someone else needs it too. #chronicillness |
| Jackie 💜🇵🇸🍉 @FassJef @beth_morton CT. It’s OKAY to not feel good. it’s important that you listen to your body. It’s also OKAY to feel GOOD! Don’t let people make you feel bad about feeling good (for once). #migrainechat |
| Krista @Kristacatlady @beth_morton A2: definitely not. My mom thinks there is some root cause that needs to be discovered. My family just does not understand how sick I am. I stopped trying to explain years ago. They care about me but just don't get it and can't deal with me being sick. #MigraineChat |
 | Adele Jayde @hawkeye2_ They do ask but I always get the feeling they want me to say better/fine and not the truth which is I’m still so sick and then I just feel bad. :( |
| Adele Jayde @hawkeye2_ My friends do because they listen to my rants. (Thank you!!💜). My family, not so much. They think bc I’ve had ~treatments~ that I should be 100% better but that’s not how it works. I’m trying to educate them. |
 | Elizabeth Turp @lizahpool Great point that can apply to all chronic invisible illness, people often respond from a place of fear #compassion #support |
| Krista @Kristacatlady @fabriKatie Yes, it is so frustrating when people ask about a root cause. They can't be present and supportive for us now. It makes me feel like my migraines aren't a legitimate illness on their eyes - - as if I need another illness to be worthy of support. #MigraineChat |
| Jackie 💜🇵🇸🍉 @FassJef @sheridanruiz @beth_morton The suggestions are the worst part! I know people are tying to be helpful but they usually never are! #migrainechat |
| Jackie 💜🇵🇸🍉 @FassJef @PyesMusings @beth_morton I want to wear a shirt that says “yes I’ve tried that” #migrainechat |
| Beth Morton @beth_morton @JEFassl @PyesMusings Ha, I'd wear that! I feel like @achysmileblog might have one like this?! #MigraineChat |
| Krista @Kristacatlady RT @bennessb: CT. Remember that other people's reactions to your health are not about you. If people don't believe you / try to minimize / give unsolicited advice / act like your needs are selfish / etc... they're telling you something about themselves. It's not about you. 💗 #MigraineChat |
| Krista @Kristacatlady @bennessb I think i need this printed out so I can be reminded of it regularly. 😁 #MigraineChat |
 | Democracy Over Demagogues @freeandclear1 RT @bennessb: CT. Remember that other people's reactions to your health are not about you. If people don't believe you / try to minimize / give unsolicited advice / act like your needs are selfish / etc... they're telling you something about themselves. It's not about you. 💗 #MigraineChat |
 | CLE change the world @Bluebirdlouise RT @beth_morton: Thank you, Brianne, for co-hosting today’s #MigraineChat. And thank everyone for joining us! Wishing you the best health possible over the upcoming holidays & I’ll see you in 2020! I’ll share some resources in the next tweet. That hour went fast, so feel free to keep tweeting. |
| CLE change the world @Bluebirdlouise @beth_morton #a6 #migrainechat recognising that just because i need to lie down doesn’t mean i am wearing an invisibility cloak. i haven’t suddenly gone deaf, or lost my ability to make my own decisions, or abdicated from all activities. Why not arrange a low table and better lighting so |
| Democracy Over Demagogues @freeandclear1 @beth_morton A3 #migrainechat this entire topic is so triggering! I need a completely fragrance-free environment (osmophobia). I barely go anywhere anymore. A few people closest to me know about this and are fairly good at accommodation. Im sick of asking for it and explaining, 12 years now! |
 | ALowerhouse @VertigoGrl RT @bennessb: @LEvlalia I really really wish we had social guidelines or etiquette rules or something about how to be symptomatic in front of other people. Because right now it feels like the only acceptable thing is to just not do that. #MigraineChat |
 | zenflower🌱 @MedicinalMAMI RT @beth_morton: Q2. Do your friends and family members have a good understanding of #migraine disease or your other #chronicillness and how these affect you? Do they understand the nature of “chronic” illness? #MigraineChat https://t.co/a5vi8FYDaD |
 | NYCresistance 🥦❤️🪴💘🌈🍇❤️ @Tracy330507 @beth_morton A3. I just keep telling them thAt my hearing on the left isn’t so good. No accommodations to speak of now other than accept me for who i am in the conditions i live with or walk out the door. #MigraineChat |
 | Jill Piggott @JillPiggott RT @OdyO11: @Alexandria_SZ @beth_morton So many people seem to be under the illusion that everything you don't die from can be healed. And the narrative that it's possible to keep oneself healthy by doing sports and eating healthy adds to the stigmatization of those with chronic illness. #MigraineChat |
| Jill Piggott @JillPiggott @fabriKatie Q2. I'm mostly housebound but use a wheelchair when I go out (for fatigue & also because I have #hemiplegic migraine & go Boom Down a lot). I think a wheelchair helps people--strangers & family--"get" that CM/HM are disabling & that helps me. #MigraineChat |
| Jill Piggott @JillPiggott RT @blueraccoon: A1: A1: No one actually asked about my health at Thanksgiving and I'm glad for it, as it's mostly depressing these days. People react weirdly when you explain that you have chronic *intractable* migraine and no, it won't ever go away. #MigraineChat |
 | Oral Livecells therapy @PurtierPlacent8 Our body is made of stemcells and the only help to repair and reverse health issues is also stemcells. Thanks God there is now oral livecells therapy #diabetis #hypertension #MigraineChat #chronicpain #lupus #tumor #Fibromyalgia #AIDS # +639175110518 |
 | 💖ktbspa96💖 @l0veableleesha Nothing helps I made it to the bed to the couch today missed work and still feeling just as bad this evening i don't know how I'll work tomorrow no one ever covers for me... #MigraineChat |
 | amy didn’t prep for nanowrimo but still did it💉 @amylestoye RT @bennessb: CT. Remember that other people's reactions to your health are not about you. If people don't believe you / try to minimize / give unsolicited advice / act like your needs are selfish / etc... they're telling you something about themselves. It's not about you. 💗 #MigraineChat |
 | Costumes @KatyKatStation I’m rereading the leaky diet list. Of course I just went grocery shopping and shouldn’t be eating half of what I got. Le sigh #MigraineChat |
 | em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton — and all of that was in addition to one of my first solo trips since developing #migraine, being with ppl who didn’t know much about what I was dealing with, and generally feeling pretty stressed. — 2/? #MigraineChat |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton I decided to send a text to one of the cousins I was staying with laying out a few of my concerns and as it turned out, she was incredibly accommodating and helpful. She even told me she did some research on #migraine to find out what would be helpful. #migrainechat 3/? |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton It was mostly little things that made me more comfortable— telling me where to find ice packs, telling me to help myself to food from the fridge if I needed some, offering to let me sit in the front seat of the car bc of my vertigo, etc #migrainechat 4/? |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton the most helpful thing she did, though, that meant a lot to me, was that she set up a safe and quiet space for me. She set up the couch in her office with water and a pillow and blanket and told me to go down there whenever I needed some quiet — 5/? #migrainechat |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton it was a dark and quiet space away from the main areas, and really helpful as I was sharing a room. It was unbelievably helpful to know I had that space to go to, and I did so several times when pain or nausea got bad or I had sensory overload. 6/? #migrainechat |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton anyway, this was a v long winded way of saying: listening to ur chronically ill guests, doing research to help understand how they might be struggling at your event, and accommodating them with anything from a safe space to food they can eat is so helpful. #MigraineChat 7/? |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton On the other hand, it is *not helpful* to do as my grandmother did to me last year, and tell me she wouldn’t forgive me if I missed Christmas due to a migraine attack. The stress caused one and I went but was miserable. Don’t bully your guests into attending. #migrainechat 8/8 |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton A5: avoid triggers as best as possible in the days beforehand, stay hydrated, get lots of sleep, and most importantly make sure I have rescue meds/anxiety meds/nausea meds left to use— and forgive myself for using them. Afterwards— rest, gratitude, lots of self care.#migrainechat |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton A4: I don’t bring it up, but generally if someone asks me how school or work is going I answer honestly and say something like “I’m actually unable to be in full time classes right now because I have chronic migraine and it’s a lot of work just dealing with that rn” #MigraineChat |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton Likewise, if someone asks why I don’t drive, why I don’t drink/eat chocolate/drink coffee, why I disappeared for an hour to lie in a dark room— I will answer honestly. It’s hard though. I won’t bring it up myself. #MigraineChat |
| em 🌹✨🏳️🌈✡️🌿✨🌹 @emilygayle99 @beth_morton A2: definitely not, and I’m already dodging all of the judgement/unsolicited advice/misunderstandings from family. they all seem to think it’s a manifestation of mental illness or caused by my weight/food. For the moment, I am too tired to argue. #migrainechat |
 | Caitlin @mrsrhysand RT @bennessb: A6. A really big way for people to support me is to *believe me* about my limits. I feel like people personalize it whenever I opt out of things to rest, especially because my spouse is usually the only one who sees the consequences of not resting first-hand. #MigraineChat |
 | Angie Glaser @winedarkme @MigraineEllie @beth_morton You /AHDA could be a co-host on #migrainechat! |
#migrainechat content from Twitter.