Social Media and Migraine Stigma

By Katie M. Golden

4 min read

Facebook, Instagram, Twitter. All great ways to connect with friends. To show what you enjoy in life and who you enjoy doing it with. Like most people my age, my friends and I love to take pictures and share them out on the web. But when my migraines turned from episodic to chronic three years ago, I quickly found out that your "friends" may not understand what you're going through.

I didn't share my migraine on social media

As I struggled to find ways to get the headaches under control, I chose not to share all the gory details on the web. I didn't want to sound like I was complaining. My "real life" friends knew what was going on, but I decided the other 587 people on Facebook didn't need to know since I never interacted with them outside of that medium anyway. Honestly, I was trying to avoid the endless comments of "Have you tried this?" or "My cousin cut out pickles and is now cured." I wanted to do it my way.

Pictures posted on good days complicated things

The migraine days far outweighed the good days. So when I did have energy, I would try to enjoy it with friends and family. And sometimes pictures would get posted. That's when I realized some people were not as sympathetic to my condition as others. I would get comments from co-workers or friends who knew me in everyday life as well as from social media. I'd hear...

How can you miss work for a few days, but then go to dinner on Saturday night?
You looked fine yesterday, why can't you get out of bed today?

If you can't work full-time then maybe you shouldn't be taking a vacation.

One picture of a happy Katie and people assumed I must be doing better...or that I was faking the migraines.

Photos don't tell the whole story

What a picture on Facebook doesn't say is that I needed two naps today and a Percocet so that I could go to dinner. I didn't drink that night and I left before the rest of the group went to a club. A picture doesn't tell the audience that I haven't seen my friends in six weeks or been out of my apartment in five days. It doesn't say that it's never a vacation when I have to plan a trip with my doctor, bring extra meds, scout out potential ER sites if needed, make sure to book a massage or two to work out the kinks from traveling, skip more than half the planned activities and know that I'll possibly be in bed for days. But it's still important to me and my boyfriend to visit friends and family and to enjoy life the best I can.

Choosing what's posted to my social media

Would they prefer that I constantly post about how I'm in pain every day? It's just not in my nature to scream "woe is me." My solution? No more pictures, no more misconceptions. Change the settings so that I have to approve anything that has my name attached. Is that perpetuating the stigma of migraines? Maybe. But I also feel that I've spent more time in the past few years explaining the illness to the important people in my life. And I'm more open about my struggles on Facebook, hoping to educate someone I may have known from junior high or camp about migraines.

So if I do share a picture from a nice meal out or a shot of me visiting family in California, they are happy for me that I feel well enough to enjoy the day. I do post less nowadays though, wanting to focus on living in the moment with the people I love. Those that I feel still don't get it, well that's easy. It's called "de-friend." Who needs negativity?

I'm allowed to have good days

I'm allowed to have good days. I'm allowed to meet with friends and have dinner. I'm allowed to have a girls day out. I'm allowed to even go on vacation. I may have to sacrifice the laundry to have enough energy to do an activity for a few hours. I may need to bring extra meds with me and rest more when I travel. And I may only be able to do brunch with my girlfriends, but skip the mani/pedis. Just because I have chronic migraines doesn't mean that I shouldn't take advantage of the days (or just the hours) that I feel well enough to engage socially. I won't feel guilty about enjoying life when I can.

We're all allowed to enjoy the days, hours or just minutes when we feel well, without judgment from others.

How do you deal with social media and your migraines? Is there something fun you want to share that you were able to do in the past year even though you struggle with migraines? And I haven't totally forsaken Facebook. I have a professional page under Katie M. Golden if you want to Friend me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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shortalina Member
Katie you are to be commended for you attitude...i know it has helped me a great deal to just be connected with you...You and I have so much in common as I struggle to focus on the good days more than the bad..less fear on the good days that I may get knocked off my feet at any moment....it's a fact but I am trying my best to no let the lurking monster impede on my good moments. I am soon to be 60 ....my grandchildren are my heartbeats...and I am managing better now than I ever have....but I hide and the real facts of my life to everyone cept the people that get it and my immediate family.....the people that think I should be walking a round with a banana peel on my forehead are just a waste of conversation and my feel good times......so I avoid the Migraine discussion with most everyone.....thank you for this blog...I have learned so much about myself and have hopes that someday I can say...I used to have those...and the days without them are so worth it...keep getting to know yourself and stop punishing yourself for being a sufferer.
1. krissyt Member
 Most my friends & family add supportive words to my posts when I say I'm not feeling good or have a migraine again. I do get the negative from some coworkers about what I'm doing to treat it or that if they're that bad I should stay home. They don't understand that as a single Mom I don't have the liberty to do that. I struggle through work at times but I don't let it getbme down. I know I have more good days than bad recently along with the best kids, family and friends a migrainer could ask for. This site is a great way to make friends going through the same migraine struggle you are along other social issues.
2. Katie M. Golden Moderator
 Susan, You are spot on. I do punish myself for being a sufferer. I always wish I could be doing more or pushing myself harder to be the person I used to be. Most of the time, I've accepted that I am a Chronic Migraineur, but sometimes it's just hard. Thanks for the encouragement! -Katie
MrCJF Member
My wife thinks I'm daft or anti-social because I have less than 30 facebook friends. The truth is all my Facebook friends are people I know in real life. Most of them are family that live abroad, or friends I've moved away from. They are generally people I can be absolutely honest with. I can't see the point in befriending people I don't know. However, I have to be careful with things like Strava, where I record my cycle rides. I took up cycling in a big way as a means of reducing stress. This was at the recommendation of my GP who told me exercise in green spaces would be good. So when I was planning a sponsored bike ride last year, my manger questioned why I was planning such a thing, when I'm sometimes too stressed or fatigued to work. She didn't seem to get that I was trying to build "good activity" into my life to enable to me to manage the stressful activity in my work life, or that the fatigue with work is headache related and comes partly from using a computer monitor everyday. So if I have a sick day now, and go for a bike ride, I set my Strava records to private, so that I don't have to explain myself when I return to work. It means that I can't can't share my stats with the local riding community, or aim for the monthly challenges on Strava, which require public settings. I have to live with that while I'm getting through things.
1. MrCJF Member
 <inline-mention username="Cheryl Picerno" user-id="3673232"/> , talespinnerkitty The incident was about 8 years ago now, and I'm working elsewhere these days. I did have great support from my union to deal with the issue at the time. That particular manger was demoted after I stopped working with her.
2. Cheryl Picerno Moderator
 <inline-mention username="MrCJF" user-id="3705696"/>, I'm glad you got the support you needed from your union. I hope you are working in a better place now. We all deserve to live the best life we can, both personally and in our places of business. I hope you have a great day! Warmly, Cheryl <a href='http://migraine.com' target='_blank'>migraine.com</a> team
nancym Member
Katie, thank you so much for this article. I am in the same boat with you regarding social media. I've also cut down my posts regarding my chronic migraines. If I were to post every time I had one I'd probably be the one who got unfriended. Nobody wants to be the "Debbie Downer" of the party or to hear the "You should try....." speech. No one outside of the migraine circle seems to understand unless they've been through the experience themselves. Days that we feel well enough to get out and enjoy them are a gift to us and we shouldn't be judged by anyone.
dollyward-paice Member
I've always had migraines, they started around 11, my father, maternal grandmother and now, unfortunately my 19 year son also has them. However, I am just the opposite of this article. After having a quack dentist do shoddy work on an otherwise healthy tooth, he has caused my TMD to flare up and now I have facial pain due to his aggravation of my trigeminal nerve. I actually, very recently started sharing some of the things from this site to my Facebook page. While I'm surprised that none of my friends that already knew of my migraines haven't commented on the recent "interest" in sharing of these articles. I look at this way, now, I no longer have to explain why I look somber, or don't want to leave my house or even better, the days I do venture out, I'm not asked what I've been drinking or smoking to cause my obvious "high."
amberduntley Member
YES. Thank you so much for this post and for the impeccable timing as well. In a way I depend on social media *because* of all the things I miss, the days I'm home in bed, the events I have to back on, and I can't stand the isolation. For me, not participating isn't an option. I've been dealing with chronic migraine for over a decade and was just in the ER 2 days ago. I tend to mention it when things are at their worst but try not to complain too much, I also emphasize my thankfulness when I'm out and doing things. Not for anyone else's benefit - I'm truly thrilled to be out with my boyfriend or friends, at a comedy show or at dinner, no matter how medicated. Also I feel we're cruelest to ourselves when it comes to this (and most things) if you are reading this YOU SUFFER TO MUCH ALREADY! Be kind to yourself!
still-smiling Member
It's the curse of social media...I find myself NEVER posting on facebook about the reality of my migraines. There are perhaps 4 people in my entire world who know exactly what I go through with my migraines and all it's related symptoms: my husband, my best friend, my manager at work and me. So why don't I post on social media about the true nature of my life and illness? Partly, it's the same as what some other people have said about not wanting to be constantly complaining or having to always deal with other people's ignorance...the other part, is that I am afraid that I would be viewed differently, pitied or even accused of faking or attention seeking and that's just not who I am -- and I would then be treated differently, the dynamics within those relationships would change. The final part of the reason is that I would perhaps only make myself feel worse if I could see a written (and dated) account of my numerous episodes and ensuing symptoms. Recently, I changed my profile picture and it was a picture taken the day after a particularly bad episode, and my mother in law who had been told that I'd been unwell but not too many details, contacted me to tell me that in the picture I looked pale and depressed and asked if everything was OK...something I can't help wondering that she sees/imagines due to what she was told...to me this just highlights plenty of the reasons why I don't ''share'' everything; there are just some things that are plainly no one else's business...
migrainesal Member
Great post as usual . . . I have found that I have had to dumb down my life and postings to get people to believe I am actually ill as wearing my full colours ( make up and doing my hair as normal ) and trying to be upbeat and making the best of myself made friends and colleagues think there is nothing wrong with me. I am disappointed that I have had to take such drastic action as making the best of myself and taking pride in appearance has always been important to me but it seems that unless I wear a bandage people don't think there is anything wrong. I have Menopaual Onset Migraines so have only been suffering for less than a year but in that short time have done soooo much research that I could write a paper and offer guidance to many new sufferers and that research and this site and such helpful postings has really helped with this debilitating condition. Unless you have suffered with it you really don't appreciate how it can change your life and affect you in different ways each time it attacks.
amcleod Member
If I post anything migraine related to my Facebook page it's an article about migraines. I learned quickly not to post information about my personal journey living with chronic migraine. I have worked very little the past few months due to chronic migraine. It seems my migraines are changing and I have not gotten a handle on how to work through the new symptoms. Anyway, I felt pretty good on Sunday so I watched my grandson for a few hours, went to the grocery store and cooked dinner that night. I normally would have posted some pics of the little guy on my FB page but I knew what would come next, the assumptions, expectations, ect. What people would not be able to see from the pics is that I took meds before he got here, my boyfriend was here in case I needed him to take over, I rested all morning before my grandson arrived, and so on. After he left it took two hours before I was up to going to the store. And I am still paying for my good day as my head is still pounding like mad, my ears will not buzzing and the pressure in my head makes it feel like my head may explode. So, should I have not watched the little guy while he was in the city (he lives about an hour and half away) and I felt well enough to do so? And if I could do that, doesn't that mean I should have been well enough to work yesterday? Many people seem to think so and I didn't post a thing. I can't even imagine the comments if I had posted something. When the moments we feel well enough to connect to family, friends, etc are so few, should we not take advantage if them? And if so, why do I feel so guilty when I do so?
Nancy Harris Bonk Moderator
Hi Katie, Perfectly said. Thank you!
cmvonhirdler Member
i've lost so many friends because of my migraines and trigeminal neuralgia. one friend, whom i had been friends with for 9 years told me that we weren't really friends anymore anyway because i hadn't seen her in a year. (its not that i was ignoring her, i'm in pain all of the time and don't see anyone) another friend who was getting married had her bridal shower / bachelorette party in another state. i flew in and got a 2nd hotel room for all of us because i thought it was silly that she wanted to fit 8 girls into one room. i made it through the shower with a horrible migraine; but when we got to the hotel i had to run to the bathroom because i was sick to my stomach. i didn't quite make it, and i was humiliated. later, we went to dinner and then some bars. i called it quits early and went back to my room. when i left, the bride-to-be cried & told everyone that i had gotten the room because i had planned all along to dip out early. she later unfriended me on Facebook with out a word of explanation. i was completely devastated for such a long time. i didn't understand why 2 friends who i had known for so long could just dump me like that. now i realize that those girls weren't true friends, and i don't need people like that in my life. it was a hard lesson, though. and one that took me a long time to learn.
1. jennm225 Member
 I suffer from both migraines and trigeminal neuralgia as well. I know for sure people don't always understand what it's like to live with the kind of pain that either/both conditions cause sometimes even simultaneously. It's quite unnerving when others say, "Have you tried {enter remedy}?" I do have some of my oldest and dearest friends and also family members that suffer with migraines as well. I'm fortunate in that regard. The way I've always handled other people that don't want to be bothered with understanding is, "If you can't handle me at worst, you certainly deserve me at my best!" Sometimes it's really difficult, and other times I'm frustrated enough that it doesn't bother me. Are you taking anything for the neuralgia?
cmvonhirdler Member
also, if i ever hear "have you tried acupuncture?" again, i will just puke!
1. lorammc Member
 HA! Right?? I simply despise that suggestion!
sheri-z Member
What a great post! I especially love the "my cousin cut out pickles and is now cured". These comments are probably my biggest pet peeve as far as migraines go.
1. sheri Member
 I was thinking the next time someone suggests a remedy, I might reply with, "vomiting on someone's shoes always makes me feel better." Eh, maybe not...but that sure felt great!
avgiacalone Member
Thanks for sharing, Katie. Having chronic migraines is a rather isolating experience and I'm glad for your articles. They, and you, are encouraging! I really relate and do the same with social media...not sharing my personal experiences. I've already taken a chance on a few people in person (didn't go so well) and would rather just share information in a positive way from an advocate point of view,online, if anything,like articles and such and if somebody asks something or is interested, it's probably because they care and want to know... then I may say something about myself. I don't enjoy having to lay down or being shut down and feeling useless. It is worse to know that people sometimes view (chronic) migraneurs as fakers or weak or whatever. Recently, I've been around some new friends (new church) and it turns out, I have met two people with severe migraines AND I saw someone with the purple wristband for Headache awareness in my smallgroup that I haven't spoken to yet. I'm just astounded. It must be divine intervention, is all I can come up with. Just thought I'd share that! With 1 out of 3 or 4 people with migraines, we're not so alone as we sometimes feel. I wonder what the statistics are with Chronic Migraneurs. Take care and thanks again.
aarnone15 Member
I loved this post! I suffered from a terrible migraine streak this past summer where I was getting debilitating headaches every day that were making me dizzy and nauseous and were extremely painful. I am incredibly socially active, and it was hard to explain to people that yes, I was going through a really tough time, but that I also was trying to enjoy my summer -- attending concerts, parties, the beach, etc. Little did the pictures and posts show, I was stocking up on migraine meds before these occurrences, or going home after these events and crashing for the next 24 hours in agony. Whenever people start to question your authenticity with your disease, it's really upsetting and hurtful. I'd get things like, "well obviously you're feeling better because I saw you went to the wineries this weekend!" Well, no, actually. Like I said, this is a great post and I totally relate to it. Having an 'invisible disease' where the symptoms aren't completely obvious and the pain can come and go in the blink of an eye isn't easy. Thanks for sharing!
sheri Member
I can relate to this post. After my stroke in early 2013, and discover of a brain aneurysm, persistent debilitating migraine was one of many issues that placed me on long term disabilty from work (I rarely had a headache prior to that day). My supervisor at work told everyone not to contact me so I could rest. Well, I do not post much on facebook, only liking my work and FB friends posts or adding information about migraines and warning signs of aneurysms. I haven't seen my work friends in over a year as I live over an hour from work. Any shopping trips I attempt by myself, which are few, are in my own community. It can become isolating at times, but you find out really quick who are your true friends(I love dearly.) The planning around these short excursions are based on my pain levels, state of dizziness, IBS from meds, and migraine symptoms (they wouldn't understand). Nothing like the drop and go person of years past. It is an absolutely crazy life at times.
lmwilber Member
Thank you so much for addressing an issue I struggle with as well. I have very few work friends on Facebook in large part because I don't want to have to try to explain how I couldn't commute for two hours and work for nine, but I could take 30 minutes and get some much needed dinner. And spot on with the pickles comment! I've had migraines for 30 years with them becoming chronic over the last several years. Does anyone honestly think that I haven't tried just about anything under the sun to escape the pain?
shirleyanne Member
I could have cried when I read your Social Media and Migraine Stigma blog. I have chronic migraine, having more bad days than good. I really do think that a lot of people do not understand how ill migraines make your whole body feel, its not all about the head pain. My migraines set off facial neuralgia and earache, severe neck pain, I cannot lay down or rest my head, and I sometimes collapse and am too weak to raise my head to be sick. So if I have a good day I rush around and try to cram in as much as possible and enjoy my family and hope I am well enough to go on a trip or family engagement. Helpfull advice I have been given include 'why don't you sleep it off'. Take a couple of paracetamol it works for me. In my dreams. I can take a fews days to recover and begin to get my digestive system back on track. Does anyone else have this problem. I do not really have any friends just my family, its easier that way because it is less people to let down if you have made arrangements to go out. I live in the UK but have been following <a href='http://Migraine.com' target='_blank'>Migraine.com</a> for sometime.
1. Member
 Shirleyanne, you just described my life. I've had chronic migraines for years and they have become worse every year. I have the same symptoms you describe almost to a "T." I haven't seen a lot of people post about facial and occipital neuralgia and I've seen almost no comments on ear pain. But my face, neck, and shoulders have chronic muscle spasms and pain from the almost daily migraines and it causes a migraine to wear glasses - they aggravate my sinuses but particularly my ear and jaw pain. My stomach is a complete mess all the time; there's not enough pain-free time to get the kinks and nausea all worked out. I've essentially stopped socializing because I don't want the guilt of always letting people down and I swear my speech has been negatively impacted as a result of all the migraines or the medications (not sure which). I can't speak the same way I used to; my pronunciation and diction are usually slurred or altered. I'm embarrassed that I sound drunk sometimes. (For people to believe I'm drunk is sort of funny - I wish! I don't drink any more - it brings on a terrible migraine.) I share all of this so you won't feel so alone. This life can be a lonely, boring and painful one but I'm thankful to know others like me are out there and that I'm not crazy. Wouldn't it be great if migraine neighborhoods existed? We could socialize with others who understand our situations and help those suffering when possible. Maybe one day!
scotchbonnet Member
Hi, I'm also a UK follower of this site, it really helps to come on and have a read of other peoples stories, lets me know I am not alone. I decided a few years ago to fade out my friends as I was tired of the non believers of pain and deliberation. Also I was forever letting friends down or felt like I was annoying them due to the fact I can't be around cleaning chemicals, perfume and their house fresh air sprays, the list is endless, they couldn't understand the reasons as to why I never went round to visit them, or why I would only want them to visit me fragrance free, in their minds they are beautiful smells, and something must be wrong with ME. I walk on egg shells daily, my first thought when I wake up in the morning is "have I got a migraine".
mamabug Member
Amen!! I have recently had the same things happen to me. Because i was up at 4am with a migraine and sent a pinterest pin to a "friend".. I got a maybe you shouldn't be sending things to people since you called in sick!..
dyannefantroy Member
Absolutely, I totally agree with the insensitivity and lack of compassion shown to migraineurs. It's amazing how people fail to educate themselves about such a common problem that so much of the population suffer with. When you think about the number of people who have migraines, you have to know that just about everybody either has a friend, family member or even knows someone who suffer with this same disease. Could all of us be telling the same lie!! I recently experienced, from someone with whom I thought was much more than just a casual friend, just wall her eyes up in her head every time I would make mention of my migraines to someone else and she thought I didn't see her reactions. It was like she was white-knuckling it. Ya know what I mean?????? She asked me to do something for her, while out having lunch with another group of friends one day. Because I told her I had "doubled" up on my meds and I could not go with her, but needed to go home and lay down because the migraine was beginning to come on, I could tell from her reaction after that, our relationship changed. I suppose she felt like because I was already out "doing" lunch, how much more would it require to go a little further to help a "friend"? It really bothered me that she would be so insensitive!! I get so tired of people saying, "OH, I had a migraine (once)." NO, YOU DID NOT HAVE A MIGRAINE ONCE. So I simply distance myself from those "friends" who would cause my level of stress to rise and possibly trigger another migraine simply because of a lack of compassion on their part. Disgusted....
1. Katie M. Golden Moderator
 Dyanne, We've all been there. You have to figure out at what point to you cut your losses with people and move on so that the negativity doesn't bring you down. But we also have to ask ourselves how much can we do to educate others on our illness? That can be a tall order when we are in pain and someone has let us down, but it's a way for us all to be heard. Just my thought for the day. I hope you have positive and supportive people in your life! -Katie
cancan Member
Katie, I am so happy I found this blog....you have been so kind to answer me on My Story also!! I have read your Social Media and Migraine Stigma blog, plus all responses!!! Can you believe, every one of these poor dears.....have been ME for 72 years!!?? The one thing I am very happy about that has happened to me recently is, I told my doctor, PCP....to check out Migraine.com!!! I think he did, as he told me last week he'd attended a Pain Convention AND a Pain Clinic. I hugged him and thanked him....I hadn't been this excited with ANYONE in the medical field in years!!! But he saw me in the middle of a mini-migraine stroke a couple of months ago...I wasn't sure what was happening to me, so my husband rushed me to the doctors office! For several years he was labeling my headaches just that...HEADACHES! But when he actually saw me that frightening day, he said, my dear, you are having a migraine stroke! In all my years I had not had anything quite so severe with my Cronic Migraines, and I have had unbearable Ocular, Vascular, Cronic...you name it....now even a migraine stroke!! And I have been told by so many in the medical field, "you will outgrow them" and 72 years later, they are worse than ever!!!! He now believes everything I have been relating to him since 2006....sure took long enough! My only issue now, he is really getting up in years, is older than me and that is scary! If I lose him, (I hope I leave this world before he does) I don't know if I have it left in me to search for another who will understand...a migraine!!!! I lost my first doctor who also suffered from migraines in 2003, after 40 years of him helping me live a wonderful life with strong meds, and I am sorry to say, I was a mess at his funeral!!! But many of those attending also understood my plight, his nurse, his wife and his assistants all knew me. But not one could tell me where to go next for help...I had to search and search for someone in the medical field who understood migraines, especially when I would tell them what meds I was taking and needed so badly! They all treated me like some kind of "monster!!!!" Thanks again, Katie! It sounds like you and I...and so many others on here are going through very similar if not identical situations with our lovely "monsters", that is what I have always called them! But only have called them that "stigma" to myself, never to anyone else until NOW!!! I am getting more comfortable with myself since writing on <a href='http://migraine.com' target='_blank'>migraine.com</a>, this place is a Godsend!!! ❤Carolyn (cancan)
1. Katie M. Golden Moderator
 Carolyn, Thanks for reading MY story. I'm so glad you found us and shared <a href='http://Migraine.com' target='_blank'>Migraine.com</a> with your doctor. It must feel great for him to finally understand what you are going through. I hope you continue to find support throught the site. Take care! -Katie
amelia Member
This article helped me feel better about having good days and I'm starting to believe that it's okay for me to have a life. Thank you.
kmripple Member
When I was finally diagnosed with migraines, I had been struggling for a while, feeling awful and dragging myself through life until I had to take a short leave that turned into an almost year-long absence from work. I finally found a great neuro but finding preventives to control the pain was a long and difficult process. Often, during those dark days of feeling miserable constantly, I felt manic when I could enjoy life, everything was special at those times. Even though I feel much better now and have been lucky to get symptoms to a bearable point most days, I try never to keep savoring the good moments like I did when there was so much darkness in my life. Migraine takes, but it also gives sometimes.
1. Katie M. Golden Moderator
 Kmripple, That sentiment is amazing- "Migraine takes, but it also gives sometimes." I may steal this. This so incredibly true. I wouldn't be who I am I wouldn't do what I do And I wouldn't love who I love If Migraines hadn't come along.
mark1961 Member
I get this all the time. I suffer from Chronic migraines so I miss many family/friends events. But when I do get out people say "well you look great today". They don't know I had a migraine all night...it took migraine meds, anti-nausea meds and anti dizziness meds just to get out of bed by 1:00 pm. And if I DO make it to a picnic...I'll most likely have a killer migraine that night from the heat and sun.
mckinney575 Member
great article. I haven't experienced this from friends per se but you point is very well taken. Even something like taking a great vacation can bring on major migraines for days from the "happy stress".
debwilton Member
So agree! Maybe we should make a "door hanger" post for our page that says, Out With Migraine. Cute and lets friends know you won't be on or responding for awhile. 
1. dizzylizzy7 Member
 <inline-mention username="debwilton" user-id="3717963"/> I don't use social media any more. I do use email ,text , ph, when i'm well enough to do so. i have to curate my screen time judiciously on the best days. i used to let people know that I wasn't feeling well and would get back to them later. that alone can take too much out of me ( uh oh I feel like i'm whining or making this up, but you folks understand that this is real and true) ah yes the suffering our own mind wants to heap on. Anyway, Now unless my response is critical I don't bother to say why there may be a delay, i let everything sit there until I am able to respond. most folks ar used to this by no and don't take it personally. a couple folks have said I was afraid to call you fearing you might be having migraine symptoms and din't want to bother them. i thanks them, and I remind them that they can always feel free to call. If I'm not well i won't answer. I take care of myself that way. and now my screen time is over. peace, s
2. Nancy Harris Bonk Moderator
 <inline-mention username="dizzylizzy7" user-id="3890787"/> Thank you for sharing this with the community. It's refreshing to hear how setting up boundaries has been so beneficial for you! How are you doing today? Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team
mardiecrucchiola Member
Mardie Crucchiola This is all so true. Facebook makes me feel so bad I can't take anymore. People are cruel. I'm thankful for the friends that have given me the good advice. I only have you guys too turn too. There's no one in my family that's left who understands.
scarby Member
Thank you, thank you, thank you!!!! Isn't it a sad testament to the world we are living in when very few who do not suffer from a disabling, chronic illness empathize while the majority criticize? It dawned on me one day at work that a coworker was using social media to "spy" on me. Yes, I can miss work due to a particularly bad migraine, spend the day (or two, or three) hiding under the covers, in a dark room, no noise on pain meds, then the next rejoin the world. But there are tricks to hiding the dark circles under your eyes. Smiles can be easy to fake. But if I walk back into the office looking too "well" I hear "You don't look like you were sick" or if I walk in looking like death warmed over it's "Oh, don't come in here looking like that! You've been off sick for a day (or two, or three)." Or, if I do manage to make it out of the house for a brief hour or so and happen to mention it on social media, or a friend tags me in a post stating it was good to see I was out of bed, then I better prepare myself for the comments I know I will get. I solved that problem! My work life and personal life do not mix on social media any longer. Do I sound angry or bitter? Probably. And sometimes I am. But I also take comfort in knowing that there are those do understand! There are those that empathize, not just sympathize. I am surrounded by wonderful family and friends that truly care about me. So, I am learning to not let those that choose to be ignorant affect me. I enjoy the days, my family and friends when I am feeling better, if not good. It it with these, and those willing and wanting to truly understand my crazy, messed up life, that I share the good and bad on social media.
1. dizzylizzy7 Member
 <inline-mention username="scarby" user-id="3879694"/> Good for you for finding a way that works for you. yes, supportive, understanding friends and family are priceless.
TiffanyA Member
YASSSS This is truth
dizzylizzy7 Member
Seems no one in extended my family gets that migraine is chronic. When I’ve had healthy days, most seem to think I'm cured and are surprised when I next mention having symptoms. I have repeatedly explained the nature of migraine. Mostly I just don't mention them. 
1. Cheryl Picerno Moderator
 @dizzylizzy7 it is so hard for people who don't experience what we go through to fully understand or be empathetic to our condition. Having an invisible disease like migraine makes this even worse. We can have really good days, but we can also have some awful ones. Many people don't look at migraine as the neurological disease it is. It's unfortunate, to say the least. It does take extra energy to constantly fight the stigma surrounding migraine. I know I don't always have that energy to spend, so it's easier to withdraw and just get on with my day. I hope those closest to you understand what you experience during attack cycles and support you. Warmly, Cheryl <a href='http://migraine.com' target='_blank'>migraine.com</a> team
dizzylizzy7 Member
 thanks , cheryl. i do , fortunately, have a few close friends who understand that I may need to cancel at a very short notice. Their support and understanding are everything to me. A few, real, friends are enough. BTW I will now often use the word "neurological" instead of "migraine" as in "I have chronic neurological issues, symptoms, disease or problems. " while people don't understand what I'm saying they tend to believe that whatever I have is real when I use that word. perhaps migraine could do with some rebranding? I get so tired of trying to explain that while I don't always have a headache, I do have chronic, debilitating, systemic, symptoms. sylvia
1. Cheryl Picerno Moderator
 <inline-mention username="dizzylizzy7" user-id="3890787"/> Sylvia, I agree; people accept things more readily if they hear migraine described as a neurological disease. They may not understand what we are experiencing, but in a medical context, there is less stigma, I think. Migraine can use a rebrand for sure! I've never looked at it through that lens, but it really makes sense. Thanks for sharing your experience with us. I understand how challenging it is to live with chronic, debilitating, and pervasive conditions. I am always hopeful that things will improve for us as we move forward while living our best life. Warmly, Cheryl <a href='http://migraine.com' target='_blank'>migraine.com</a> team

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