Migraine Awareness Month Blogging Challenge #26: “From the Outside Looking In” — Write about what you think your family, friends and others think a day in life, a day with migraine disease is like.
This is the perfect time for me to reflect on what my life with migraine looks like to others. I’ve just returned from a long weekend in Minnesota, where Hart and I traveled for a wedding and to visit dear friends and family—many of his college friends, his sister, our closest friends from Seattle and my best friend from college. I spent much of the weekend in bed, though I made it out most evenings and managed to see everyone except my best friend from college. What was unique about this trip is that I was stuck in bed even though the pain never got above a level 6.
(Background: The longer people have known me, the less I have let them see how disabled I am. Counterintuitive, I know, but it has only been in the last three years that I’ve really let people see how sick I am. And by “people,” I mean everyone, including Hart. Including myself. There are many reasons for this, but two rise to the top of the list. First, I deluded myself into thinking I wasn’t as sick as I am by hiding from myself how debilitating the migraine attacks are. It was as if admitting how sick I was would somehow make it harder to improve my health. That if I couldn’t push through the attacks as I did for so many years, then something was really wrong with me. Also, I was ashamed of being sick and couldn’t shake the feeling that I was faking it. If being sick was a mindset, as I have so often been told, wasn’t my inability to get better a sign of weakness? Besides, how could a headache make me feel faint, weak and dizzy and make my knees buckle?)
I think most people I know understand that I am in terrible pain during most migraine attacks. I have been much more open about that aspect of the migraines in recent years and even began sharing my pain ratings. They also recognize the burden of nausea, because it is a relatable symptom, and photophobia, because I always wear TheraSpecs migraine glasses. [disclosure: I’m the co-owner of TheraSpecs]
I’m not so up-front about the less tangible autonomic symptoms—they are more difficult to describe and, even now, I’m still skeptical of their validity. Thursday night I was at the science museum with friends when my knees began to buckle and I thought, “Come on. Is this migraine really so bad that I can’t even stand up?” Yes. The answer is YES. Even I, a so-called patient advocate and the one experiencing the symptoms, could hardly believe it.
My college friend and I were scheduled to spend Friday together. It took me 30 minutes to gather enough strength to get out of bed. As soon as I did, my knees began buckling. I literally could not stand up. We rescheduled for Saturday. I awoke Saturday completely exhausted and nauseated, so I rescheduled for Sunday. Sunday I was so weak that I couldn’t even get out of bed. So I didn’t get to see my friend at all. The guilt is tremendous, especially because I still feel like I’m making up for being too sick to fly to go to her wedding three years ago. Also because I find it difficult to believe that the non-pain symptoms of migraine can be so bad that they keep me bedridden.
I’ve been struggling with this the last few months, actually. Even though I intellectually know better, I still tend to think of pain as the primary component of migraine. Since the pain has let up some since starting magnesium and, more recently, beginning to take Amerge at bedtime to reduce the severity of my middle-of-the-night migraine attacks, the autonomic symptoms have been more prominent. I assume they’ve always been present to the same degree, but pain overshadowed them. I can hardly grasp the impact of these symptoms myself—there’s no way I can expect my friends and family to understand them.
To answer the question, my friends and family probably think a day in the life with migraine is full of pull-your-hair-out pain, gut-wrenching nausea and recoiling from light. Some days are like that, though I’ve had far fewer of those in the last six months than the previous 10 years. Other days I physically feel like I have the flu and spend the day reading. Since I adore reading and migraine kept me from doing it for four years, those days aren’t too bad. Cancelling plans is particularly frustrating, though, because I think I should feel well enough to go out if I’m not in horrendous pain. (Should. Now that’s a word I’d like to strike from my vocabulary.)
These are just descriptions of my migraine days. There are similarities among migraineurs, but we’re all different. What are your migraine days like? Do your friends, family and coworkers see them as they really are or do you put on your game face?
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.
22 thoughts on “Showing Others What a Migraine Attack is Really Like”
When it comes to my migraines, I usually become noise and light sensitive. Ears ring and ache as well. But one of the most troubling things with my migraines is the fact my balance is screwed over. I’m super dizzy and have problems just sitting up. Standing is out of the question unless I have someone around to assist me. I also get sharp pains in my head along with everything and also find I’m more snippy from my migraines. Anxiety, stress, and digital screens generally fuel the migraines as well.
All I can say is thank you. Thank you for not making me feel like my pain is fake, like I’m not just trying to “get out of” doing something or going somewhere. I can’t tell you how badly I needed to read this. I’ve had a terrible migraine every day since October, and I’ve tried everything. I’m on my third neurologist (well, 5 if you count the 2 in the hospital). I’ve been told 1) to meditate (I do this every day anyway), 2) to go to a mental hospital (I have anxiety, but it’s not at a level where I need to be hospitalized!), and 3) that I’m fat and that’s why I get migraines (I’ve lost 20 lbs in the past year). Since I’m not an adult, I have no control over how my physicians treat me, and today my mother pretty much told me I’m faking. I’ve had to move schools, post-pone exams, and stop doing pretty much everything that used to make me happy. Sometimes I wonder if I’m just making it up, but then the door opens and the light streams in… let hell begin all over again.
I am going through this right now. You have no idea how hard it has been to find another teenager going through this. I am overweight and have been essentially thrown to the side and disregarded by many doctors until I lose all the weight. Am I just supposed to snap my fingers and have it gone so they can choose to start treating me? I used to be a two sport athlete and had to give it up because I can’t even get into a full week of school. I used to be 5th in my class and my class rank has dropped 20 spots. One of my parents believes that it is completely psychological and I’m choosing to lie in bed day after day and watch my life pass me by. They say that I need to show some fight and that I can’t just fold up like a one dollar bill. But this parent has given no effort to understand what is going on and has only been to one of the many many many appointments that I have been to. They say that I haven’t tried anything even though I’ve lost weight like the doctors have asked, I’ve been to chiropractors, I’ve tried so many medications with so many side effects I can’t even count them, I’ve tried identifying triggers, I’m trying acupuncture now, Ive been to endocrinologists, I’ve been to psychologists (who have all said that I’m relatively fine except for some anxiety that derives from migraine) and they told me today you can’t just lie in a bed until your fifty and waste your life away. This. isn’t. a. choice. I would love to know if you have had any success with your family and how they view your migraines, how you’ve been dealing with school, and if you’ve had any success with your health. Best Wishes!
I can’t stop crying–relief, empathy. I have felt like no one understands, even my doctor doesn’t believe me. “You should be feeling better by now.” I question myself, compare myself to other people who “push through,” begin to accept the narrative that I am somehow to blame for these physical and emotional feelings. This is the most helpful blog/article/anything I have read to help me feel I am not alone, that someone else is having this experience, that it’s real. That I’m not crazy.
Thank you for your kind words, Tara. I’m so sorry that you are having this experience, too. You are definitely not crazy, alone, or to blame for what you’re going through.
I also write for Migraine.com (https://migraine.com/author/kerrie/). Let me know if there are any topics you’re interested in and I can point you to specific articles.
My friends know and understand and accept my migranes and have even helped me through them at tiems. But my family like my mother who I am currently living with, it’s hilarious because she also suffer’s from them not to the same degree I do though but she doesn’t believe they get as bad as they do and so last night I feel like my head is literally attempting to split in 2 and she allows my 5 year old to bang on the piano for 5 minutes after I already told her I wanted him to go to bed….she doesn’t understand how bad they are and believes I am being over dramatic about it. I am wondering if you know of a way to make her understand. I am at the point that pounding my skull against a brick wall with a 50 pound weight would make the bad ones feel better. I seen neurology and I’m on drug therapy now I guess we will have to see if it begins to work.
I just recently found your blog. I suffer from chronic migraines as well and lately I’ve had one every day the last few weeks, all leading up to a 9 if I don’t treat it with Relpax. However I’m nearing the end of my supply, about to embark on a 10 day honeymoon in Ireland and am anxiety ridden over how this will ruin our trip.
My husband doesn’t understand and gets frustrated at times, especially day after day of me being basically useless and irritated from the pain. I’m in what I fear is a rebound cycle but I don’t have the time, or pain tolerance to ride it out for god knows how long. I’m also a mother and lately feeling like a pretty lousy one from feeling terrible.
I just want to feel better. I want people to understand what I’m going through, mostly my husband. It’s really not an ideal way to start a marriage but this is where we are unfortunately.
I’ve tried every class of abortive and preventative therapy. I’ve tried physical therapy and am about to try Botox as well as that ear piercing. It’s really one of the most defeating feelings I’ve ever experienced.
I’ve had migraines since I was 6 years old. The doctors believe its hereditary because my father, uncle, mother, and grandparents suffer from them. But now my husband of 8 1/2 years, is telling me that he basically thinks I’m just sleeping my life away. I’ve tried so hard to make him understand that it’s not a choice. If I had a choice, I would much rather be out of the bed and having fun with my family. Feeling so frustrated right now, I mean, if my own husband doesn’t believe me, who will. He’s even seen me cry out in pain, vomit, and not be able to get out of the bed…so he should know. Instead, he feels cheated, like his life would be much different if he didn’t marry someone with migraines. I’m just sad, and tired of trying to justify myself to people who have no idea what these monsters are like!
Kerrie, thanks again for sharing so much about your struggles with migraines. I was reading your site right now, because I have a very mild migraine at the moment. Probably only a 2.
Magnesium also helps me, and if I start slacking off on it, the migraines come right back. One thing I discovered is that certain B vitamins help your body absorb the magnesium better. So I started taking a B complex about every other day. Taking an isolated B vitamin (B2, B6, etc) is not recommended, because B vitamins get out of whack when you have too much of any one of them.
Hopefully this helps, and I wish you all the best as you continue to search for relief and help!
Lynda, your comment inspired an entire post. http://www.thedailyheadache.com/2012/08/all-migraineurs-are-different-so-stop-judging-me.html
I think you should worry that you are clinging to your migraine to define you and that you wouldn’t know who you were if the pain went away, so it is helping you by not going away. I am a chronic migraneur as well, every week, I lose a night of sleep at least and two days to a horrible headache, but I have managed them for 2o years of work and supporting a family and myself. yes there are days I must come home. but oddly my headaches wait til friday night to take me down so I can perform my tasks. I question your will when I read your attitude. You are lucky to have your husband or you would die, or wake up.
I get days where I feel just so fatigued, I have to sleep or just feel drained all day. It’s so confusing to know what’s a migraine, what’s a sx, and what may be a regular cold coming on!
John- Keep searching until you find a good neuro doc! My last one told me that at 5-6 migraines a month and daily headaches, I was doing well. I could not believe I was paying her to tell me that I was fine when I knew I wasn’t. My new neuro (this is my 3rd) is on a quest to find answers and help me lead a productive life. It’s through the University and he has been the most insightful doctor I’ve ever been to! Please don’t settle for doctors like that.
Thanks for the great comments. I’m glad the post was so helpful. It is sad that so many of us think we’re faking it even while experiencing such debilitating symptoms and that it can be so difficult for friends, family and even doctors to understand.
Sometimes I think the first step in getting support from others is believing in ourselves. If I ever figure out how to do this, I’ll let you know!
Im 37 been healthy my whole life until 3 months ago. This hit my like a train. I can’t explain fully my symptoms to neuros and doctors. You have hit them on the head. Thank you. I’m fine then u drive and loose the strength in legs and arm and get nervous all of a sudden. My doc says i def have some migraine not sure which but it would never effect driving. I need a new doc. Thank you for your insight I’ll be following you
Amber- I almost cried too! I think part of the problem is that we are bombarded with people who do not know what we are truly going through and sometimes when they question if we are faking it, it gets in our heads and we begin to wonder.
I wish this disorder on NO ONE but it really makes me feel human again to know that others out there like you ladies know what I know. It’s scary and often times lonely feeling this way everyday.
When I read the bit of your post that says, “couldn’t shake the feeling that I was faking it,” I cried. I have struggled with this for YEARS. I’m disabled and can’t work because of my migraines. It’s impacted every single aspect of my life. I’m in constant pain, vomiting at least 6 times a week. And yet… I’ve always wondered if I’m faking it. It’s always in the back of my mind, every day. I trust myself and believe in myself so little.
To hear that even ONE person has wondered the same thing is incredibly heartening.
I agree 100% I also struggle with others beliefs of my pain….. I hurt soooo bad and get so uncomfortable. I even wonder is my body playing tricks on me? How could someone possibly be sick as often as myself. When will my family, friends, Co workers and employer stop believing me and why don’t most ppl understand how debilitating it is…. unless they’ve seen me with one. I have even passed out and Fallen down the stairs to wake up with one. And honestly preventative make me feel like a guinea pig, I’ve only had frightening experiences or constant headaches with them all.
I can totally relate to this, I’m 16 currently going through my exams and I’ve never felt so low and sad with the thought ‘maybe I’m just being silly’ or ‘maybe it’s not that bad’ and I can’t explain to someone who doesn’t get them often how bad they actually are and people think I’m faking it some times and I just can’t describe it! X
Hi Migranes are painful,sometimes the things you think won’t work do in there own funny ways.I have found mindmotivations.com and tried out the mp3 ,not sure how it works but it has reduced my migranes and I want to share it with you.
My family knows how debilitating migraines can be, thanks to my mother having chronic ones for years. However, my boyfriend, even though we’ve lived together for 8 years now, still thinks I’m being a “baby” when I have my migraines. I’ve never been able to express to him how truly painful and debilitating they are, so when he comes home from work and complains about being exhausted, and I respond that I feel exhausted too, he asks me what I did and I say I had a migraine all day and had to lie on the couch because I couldn’t move, he gives me the patronizing”oh poor baby” and tiny violin attitude. It drives me up the wall, but what can I do? So many people can’t understand that migraine pain can be so intense that you can barely do anything productive at all some days. Sometimes I wish I could transfer the pain to them, so they know how it feels!
Knowing that I suffer from chronic migraines and my daughter has episodic ones, my daughter’s pediatrician told me about your blog. I cannot believe how similiar our symptoms are! I will be reading everyday if I can. It’s comforting knowning I’m really not allow in this!