I don’t know how you do it.
RATE

Whenever someone says “I don’t know how you do it,” my head is full of things I want to say but don’t. In my fantasies, I imagine a very one-sided conversation that goes something like this…


You always say that. I usually respond by shrugging it off and changing the subject when what I really want to do is shake you hard and scream,

“IT’S NOT LIKE I HAVE A FREAKING CHOICE, NOW, DO I?!?!”

When I talk about living with migraine and cluster headaches, there is a disconnection between the words I use to describe my experience (very accurate) and the emotional impact of really living it (disconnected). I tell my story like an AP reporter – all facts, no emotion.

It’s one thing to say, “Sometimes the pain is so intense, I beat my head against the wall, pull my hair, and shove my fist into my eye just for a bit of relief.”

It’s quite another to tell the whole truth, “In the middle of my worst pain, no one sticks around. There is nothing anyone can do to stop the searing fire. So I pace the floor screaming obscenities in my head while burning tears stream down my face. Unable to quench the flame, everyone flees from the beast inside my brain. It’s the isolation that drops me to my knees, sobbing for a quick end. The worst part is feeling so abandoned.”

I don’t ever tell you the raw, unfiltered truth. Yet you still insist, “I really don’t know how you do it.”

Do what? Breathe? Crawl out of bed each day? What else would you have me do? I’ve lived this way for as long as I can remember. I wouldn’t know what to do with this imaginary thing called “being healthy.” How do healthy people accomplish so little when they don’t have this kind of pain holding them back? What’s your excuse?

Even now I feel the pain. The muscles of my back are burning in protest. My neck is stiff and sore. There is a dull ache that is resting just above my right brow, threatening to explode. This is just part of my experience. If I stopped every time my body rebelled, I would never get out of bed. Most of the time, getting out of bed is exactly what makes it better. I must push through the intense pain if I am to find that tolerable ache with which I can function.

Can’t you take anything for the pain?” you plead.

Well, sure, if I want to be a zombie for the rest of the day. I suppose I could, but why set myself up for even greater pain down the road? I can and do take pain medicines as prescribed when other measures fail to keep the pain signals down to a dull roar. I’m not a martyr, but I’m not a coward either. I know that the life I’ve been given requires work that most would not do. Of course you don’t know how I do it. You’ve never experienced a life like mine.

…and I don’t even tell you half of it.


It’s your turn!

When you talk about migraine, is there one thing people always say? Do you hold back? What do you dream of saying instead?

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53 comments on “I don’t know how you do it.

  1. When someone says ” I don’t know how you do it ” my thoughts are what other option do I have? I suppose a normal answer would be ” its not a big deal I will just take some Excedrin. I guess I’m different because I have never had a problem telling anyone how I feel during a migraine. My descriptions are short and to the point. The common answer is …it feels like someone keeps pounding me in the head with a hammer. I don’t mean to be graphic but another reply is ” I would rather have an entire NFL football team kick me in my private area than to have a migraine”. That reply usually works. Men and women understand that reply. I’m one of the lucky few who has a very understanding and supportive spouse. Please have a great day 🙂

  2. The one that hets me most is, “Isn’t there anything they can do about that?” I’ve lost count of how many times I’ve heard different variations of that question. Of course there are treatments and medications we can TRY, but there’s never a guarantee as to how effective they will be or for how long. All I can do is muscle through and hope I have the strength to make it through the day.

  3. Virginia says:

    A friend of mine often would say, you don’t look like your sick. or, if you just throw up you will feel better. Even saying “No one can possibly have that many migraines and keep working like you do.”
    Some of the things that people have said to me have been cruel, some very unfeeling at best. I know at heart they are concerned and don’t have a clue how to address the elephant in the room.
    At one point, on a rather terrible, horribly painful day an acquaintance said “how do you do this, I just couldn’t handle it at all.” I quit biting my tongue, and retorted that I would rather deal with daily migraines than have no empathy, kindness, or understanding for the trials others go through in their lives. That shut them up.

  4. Next time someone says i don’t know how you do it i am just gonna have them read this article

  5. SleepyBri says:

    I’m very open with my clients when I’m having a migraine, which leaves the floor open. Inevitablly, female testers over around 4oish will say “I had those when I was your age, too. But don’t worry, they’ll go away when you hit menopause.”

    All I can think is…”Oh good. 4 years down, 20 to go.”

  6. Jillian S moderator says:

    SleepyBri,
    Thank you for sharing your experience with us.
    My grandma used to say the same thing to me when I was younger. But for some reason, thinking about menopause when I am in my twenties just feels plain wrong.
    I don’t expect my migraines to disappear. I can live with them. It is just a matter of finding ways to manage it and the right support.
    It is members like you who are open to sharing that make our community such a supportive place to be.
    Best,
    Jillian (Migraine.com Team)

  7. Luna says:

    “they’ll go away when you hit menopause.”
    Don’t count on it.

  8. Virginia says:

    For some they may go away, but not for everyone. My Mom had her first migraine in her 70’s.

  9. Jani8 says:

    A long time ago, a co-worker said “I don’t know how you do it.” I’d had it up to here with questions like this so I turned to her and said, “What should I do? Commit suicide?” I haven’t been that vehement since then. However, I also hate questions like “Did you take something for it, like aspirin?” or “You don’t really want to go somewhere, so you will get a headache so you won’t have to go.”

    Sometimes I don’t know how I do it either.

  10. Cookie says:

    It’s the disingenuous comments from people in my life that really frustrate me. I was at a family gathering when someone asked if I was going to be able to come to a family function the next week when my mother-in-law said, “Well it depends on whether she DECIDES to have a migraine or not.”
    Then they expect me to drink an herbal tea, or meditate for 5 minutes to make it go away. “It’s probably just stress.” Ugh!
    The “I don’t know how you do it” question is often tinted with a very sharp blade in my in-law family. My own father’s side of the family is full of migrainers so they understand. Fortunately, I only get 15-20 per month, unlike so many of the others on this string. My heart breaks for anyone who truly suffers from this beast in our heads. We ‘do it’ because we have no choice.

  11. Tammy Rome author says:

    I get a lot of grief from my in-laws, too. Hang in there. You are stronger and better than the lot of them. Happy to have you part of our Migraine.com family.

  12. I echo the frustration with physicians. I really wish my Dr could live inside my head for a week. I’m a nurse. I have had migraines for almost 30 years. I know my body and what works. I have managed over the years to have very few ER appointments when I have had the right “tools” for pain and symptom management. I have ALWAYS used medication as a tool and not a crutch. I had a Dr that was willing to partner with me and TRUST me regarding pain management but he left the clnic. Now the prescribing patterns are so scrutinized because people abuse prescription drugs, that the people who need them cannot get them. My Dr required me to sign a pain management contract (which in theory I’m fine with)stating I would not get prescriptions from anyone but him; I wouldn’t go to any clinic other than my primary, I could only go to 1 ER and 1 pharmacy and I had to be subjected to random urine drug screening test. (Which NEVER has turned up anything except for my prescribed meds.)This is what they do to people who “Dr shop” I’m being treated like a “restricted patient” (that’s what my clinic calls it) to protect me from myself apparently. I have to practically BEG for anything for pain. then tt makes me SOUND like a drug seeker!! Then, I get 30 pills to last 90 days. I’m also required to see him every three months. If I was going to have an addiction problem, I’m pretty sure with 20 migraines a month that it would have happened by now! I have been with the clinic exclusively since 1992. My records are ALL there. Yet, I cannot find a Dr that will be my partner in managing my migraines. (And in the clinic system I’m in (for insurance reasons)my neurologist cannot prescribe pain meds. They can prescribe preventive meds and give me Botox every 3 months, but nothing for pain. So I guess when it is out of control I’ll just start going to the ER at $2000 a trip instead of managing them with my migraine meds and pain pills if I need them as a last resort. Does that make ANY sense?

  13. Karen says:

    My heart aches for you. It breaks my heart to hear migraineurs referred to as drug seeking or, as my (now ex) neurologist called me last week, a drug addict who can’t see that my migraines are being caused by my drug use. (All he’s ever prescribed for me is muscle relaxers, antidepressants, and 10mg of methadone, 15 pills for 30 days) Hang in there. You are not alone.

  14. Jillian S moderator says:

    Jackie,
    Thank you for sharing your story. It is unfortunate that you have been incorrectly been labeled as a “drug seeker” though you are just trying to treat your pain.
    I thought you might be able to relate to this article on opiate therapy: https://migraine.com/blog/opioid-prescriptions-headache-patients-primary-care/

    I know that you have been with your practice for a long time, however if you are considering finding a new doctor, feel free to check out our directory: http://migraine.com/blog/looking-for-a-migraine-specialist/

    Best,
    Jillian (Migraine.com Team)

  15. An hour after I read this post, I went to a new massage therapist. Her first comment when I told her I was there for migraines? She told me, “I don’t know how you do it.” She then proceeded to tell me about HER headaches and how I should drink more caffeine. I mean, really?

  16. mbogan says:

    I don’t think I’ve ever read or even heard discussions about the emotional toll migraines, particularly chronic migraine has on a person and anyone remotely tied to them. The feeling of isolation is unbearable. Not only are you feeling the physical pain that is often worse than childbirth then no one wants to be in your presence because of the utterly helplessness they feel. And when this occurs 20/30 days a month it is hard for a “normal” person to comprehend the pain. How can anyone be in that much pain and accomplish anything? Well if I don’t get up and try I would shrivel up and disappear. I have to drag myself up and paint on my ” happy” face and force a smile. And muster a squeaky laugh at just the right times. And shuffle from room to room so my family feels like I’m a mother, daughter, sister, wife. How do I do it? Barely but I try. I want to be healthy. To belly laugh, to not be afraid of what’s going to set off the devil that resides in my neurological system. So that he had me projectile vomitting and banging my head and crying in agony because nothing and I mean nothing helps. But in the end I survive, barely but I do make it to another day. And maybe, just maybe today will be a good day!!!

  17. Karen says:

    I can relate. My husband gets so frustrated when I can’t get anything done while he’s working. I try to explain, but all he sees is laziness. I pray that today is a good day for you.

  18. Nanci333 says:

    Great discussion. I think in a way I have isolated myself from many of the people that ask that question now because I’m sick of answering it and listening to people tell me what I should and shouldn’t do. I have been dealing with this for 27 years and have tried everything. I know what triggers effect me and believe me I avoid them at all costs. Sure I’d love to have a drink (or two) but I know that if I do, I won’t be able to get out of bed for three days. Not worth it. I understand people just want to help and I am grateful for that but I’m just sick of migraines being the center of my life. I dream of someday when someone asks me how I’m doing I can simply say “good” and it be true.

  19. Kristyinpain says:

    My migraine has unfortunately taken a huge toll on my life. A year ago my husband asked for a divorce. Because of my pain, I was constantly in bed. I had been isolated from my husband and 2 young boys for a long period of time. Long enough for my husband to feel lonely and working as a single parent. We had to hire a nanny to take care of the kids, as I lay in bed, day after day, in pain and falling into a huge depression. I found out that besides my husband wanting a divorce, he was also having an affair with our nanny who was 20 years younger than himself. I also found out that he had also had an affair 4 years earlier with a different nanny, also much younger than he.

    So, the question asked is ‘how do you do it?’

    How do I deal with my depression, pain, isolation and the fact that my 10 year marriage was going down the drain? Not to forget that my 6 and 8 year old sons barely know or see their mother.

    I had to push. I had to fight. I needed help! My husband and I started in couples therapy. I also started in therapy for myself, also meeting with a psychologist who has put me on antidepressants. I sat down with my neurologist AND my husband. We had to drive home the fact that my neurologist HAD to come up with a better medication plan because if he didn’t, my family was going to fall apart.

    ‘How do I deal with it’? I deal with it day by day. Every day is different. You have good days that you can push back the pain as best as possible and have a life for that day. And there are days that you end up in the ER screening at the top of your lungs between periods of excessive vomiting.

    That’s how I deal with it.

    My marriage is getting better. My husband has become more passionate and understanding. Knowing that im trying my best and appreciates the time I spend with them. My sons love their mother and are always excited when I can join them in family activities, even if I can join for part of the day. A dark vail has been lifted from my family, and we’re all learning to live with chronic migraines. Not just me. Just as I felt alone with this pain, my family felt alone without me.

    Step by step, day by day……I hope it all gets better soon. Damn you migraine, I’ve become a fighter!

  20. Tammy Rome author says:

    Thank you for sharing your story. I am so happy to hear that you and your husband have worked to improve your relationship and your migraine management.

    Tammy

  21. My wife suffer daily migraines and has ever day since she gave birth to our 2nd son on 11/12/09. We have a 8 and 6 year old sons. Your life sounds so identical to ours except I never have or even considered filing for divorce. Her migraines have Ben hard on all of us, but I love my wife unconditionally with or without migraines. I am so sorry it’s caused marriage problems. It has with us but for different reasons. My wife left me as I made mistakes trying to “fix” her. I realized that’s not support. I can’t fix her or anyone. I can only work on me and I learned to truely support her by making her more comfortable, doing all the housework, taking care of our 2 sons, getting anything she needs, giving her space to be alone in dark. I hope your marriage brings u closer together. I feel ur pain as much as I can but can’t truly feel it physically. I hope my marriage works as we in counseling as well. I just want you n my wife to know as a spouce I try my best, I care and support each n every 1 of you. It’s easier said than done, but keep fighting for your marriage n hope both our marriage workout n both u n my wife are supported as you deserve. Know I appreciate your struggles,and again I hope this brings ur marriage closer. It’s not ur fault u got daily migraines.please know your kids n husband love u. I made mistakes by not educating myself as I should of. It’s been 6 years and I’m still Leaning to be the husband my wife needs. I thank u for sharing. I’m here if u ever need anything. I don’t know ur migraines pain but an in experience in a migraine marriage. Best wishes, please remember this isn’t ur fault and u have live and support

  22. This has been said to me many times. Most people are trying to be as sympathetic as they can be. I think they know they can’t comprehend how terrible I feel. They can see that I don’t look right and may not be speaking well. I have said quite a few times in as nice a way as I can manage, “lt’s not like I have a choice.” Very few people respond because I think they do not know what to do. They also cannot really comprehend being plagued with severe headaches daily.

  23. Most people don’t know. The majority of people do not know that ideal with 4 to 8 headaches at a time. They realize that I suffer with chronic migraines, chronic tension, and chronic clusters. Nor do they understand just how I fear what use to be rare like 4 to 7 a year sinus headache then Turned into week long sinus headaches about 5 or six of those last year to what I am fearing is chronic sinus headaches.

    A lot of my close friends well the three who knows don’t ask because they suffer with them to or least the migraines. My life long or close enough to it 6 to 8. Three of them suffer from semi regular, two has very intense rare migraines, and the others it is so ingrained into our life my life that it just is.

    There is the strangers who know though. These strangers are usually customers some of them suffer, others know someone who suffer. So the ones who suffer usually don’t ask the question but the ones who ask all get the same answer from I don’t know how not to. I have had the tension and migraines since I was like three or four.

    As a child I felt lucky still do blessed really my PawPaw suffered with the disease but he did not have the blinding headaches that most have. Yes, he touch his head wince slightly and sigh. Then his misery would start no more than two mins later his personal rag/hankie or the one me and my cousin had tied to a pants loop.

    We would stumble down the mountain if possible sometimes we would have to wait and finish the chore at hand. I mean if you e were in the woods we usually were able to head straight back. But a man with his head tilted back and two concerned toddlers saying we can’t go to fast it will make it worse, don’t fall we don’t need more bleeding, mammaw said you would get one, can not baggage down the Appalachian mountains very fast even if it is his back yard. And well the bee hives that was a different story altogether with toddlers scrapping the rest of the door while the man in missery fussed don’t break the comb smoked everything children included then blindly put the top back.

    Once home the rags went straight the garbage new ones made then the nose packed head had cold rags the man. Hours and packs later two worried children who had turned to a not understanding baby the youngest and two concerned older grand kids all worried and concerned. Three concerned daughters and a worried soninlaw plus the by then chiding wife.

    “I told you Bill you were do one. They get worse and worse. One of these you’ll be up there (pointing to the mountain)and you won’t make it back in time to pack or you will hurt yourself worse by falling and getting cut. How would my babies make it home then huh. His response on they may be little but they know there words of would sending her into a trainee his hand back to his head and the hole house hold scrabbling to stop the next onset before it started. This would lead to her even more worried and her getting a headache by then mine would probably kicked in from being concerned for my PawPaw. My sister would be crying as the youngest not understanding. My youngest aunt would be wrangling us into the back bedroom my father with my PawPaw my Mom or aunt tending to a mama’s whose head was beginning to ache. The other trying to save dinner. Not happening pitching it all. Then a call in for pizza a promise of the rare treat of pop instead of sweet tea.
    I would not be able to deal with a nose bleed like that. I don’t mind my headaches I don’t know a life without them so I don’t know what that would feel like that. So my answer always is I don’t know how not to. They have gotten more intense or frengant or what ever but I still do not know whAt to do with out them.

  24. Adamsgran726 says:

    I usually say, “you do what you gotta do.” Like you, I feel like I don’t have a choice, so that explains it as simply as possible.

  25. barb says:

    It’s always frustrating when people say I need to get to taken care of. Really?! @#$#& I’ve had them since I was 14, it’s not like I’m sitting arround twiddling my thumbs.

  26. mimi says:

    The pain is tough but it is the isolation that Tammy mentons that I find the hardest. I always look at the phrase “I don’t know how you do it” as a sign of the person caring but I know there would be no understanding if I were to explain the emotional side of migraine suffering, let along the physical side of it!

  27. Monica says:

    I COMPLETELY agree!

  28. I absolutely cannot stand it when a person tells me they had a migraine once in their life at some point. Once really? Then they continue to tell me how bad a headache it was and how they took some OTC med/herb or nonsense and it worked like magic and I should try it. REALLY??? I would hate to doubt another persons pain but it’s obvious they never had a true migraine in their life and have no idea what one is and their feeble attempt to console, comfort or bond with me just infuriates me to no end! UGH!!! You have no idea what it’s like to have a true migraine and deal with having your head feel like it trying to self implode? or your eyes are popping out of your head and the near sight of any light is blinding? maybe your face is trying to peel itself off your skull? Or the scent of anything makes you vomit or scream inside? someone if prying your teeth out one by one? How about someone hammering a spike through your eye while simultaneously twisting your guts into a bow? Then there is the violent vomiting while your sitting on the toilet because your body can’t get rid of all it’s contents fast enough and nearly fainting from exhaustion and pain? Oh and of course not being able to speak or communicate because all you can do is wail in agony, pace and cry because you can’t lay down, sit still or do anything to ease the onslaught of crushing pain. That’s when my mom calls the ambulance because I may be having a stroke this time type of migraine. Yes I’m sure you understand migraine because you had one bad headache once and took an excedrin migraine or whatever…. puhhhhleeeease.

  29. adefalco28 says:

    Tammy you hit the nail on the head with this article. And everyone’s responses are so right. I don’t have that filter between my brain & my mouth that keeps me from saying “WELL WHAT THE HELL AM I SUPPOSED TO DO???!!!” So I just say it.
    The doctor thing: I would like for the 6-7 different docs I’ve seen in the past year to have a week long ice pick in their eye, vomiting, aura, hallucinations, even my hair hurts. No preventative meds have worked for me. I used to have a wonderful compassionate doc who would give me meds to take the edge off the pain so I could function. With the new laws, docs dont want to get you “addicted” to something. It’s so frustrating. I told one doc I was going to buy & use illegal drugs cuz nothing helps!!! He looked like I grew a hamster out of my ear.
    So this is my rant. And don’t even get me started on the pre migraine phase. Puleeze!!!

  30. I’m the same way, I’ve failed the majority of preventatives and finally ended up on two combined in order to get some slight relief in the severity of mine. I still get about the same amount but at least the pain isn’t quite as bad. I sure hope you find some relief soon. My heart goes out to you.

  31. Meaghan Coneys moderator says:

    Hi adefalco29 – thank you for sharing so honestly with us! It is good to hear you and we are happy you are a part of our community. Sounds like your symptoms are very difficult to manage and severely affect you (and that’s probably barely even scratching the surface of it). I thought maybe you would find these articles helpful – https://migraine.com/blog/a-list-call-for-creature-comforts/, https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/. They give tips and tricks for managing symptoms while in the midst of an attack. I am sure have tried many of the tips before, so apologies in advance if they are redundant in any way, however thought I would send anyways. Wishing you all the best today. Warmly, Meaghan (Migraine.com Team)

  32. mbogan says:

    I agree with you. And I have gone to the black market to get pain relievers. I hate when it gets to that point but sometimes you gotta do what you gotta do.

  33. Victoria says:

    There was one time the phrase did NOT bother me. It was when my then-16-year-old daughter was crawling up the stairs suffering from her first migraine. She was overwhelmed with the pain and nausea. It broke my heart to see her experiencing migraine like I have since I was a teenager. It brings tears to my eyes just thinking about it, and that was 12 years ago.

  34. I so understand you on this one, both my girls got passed down my migraine genes. It breaks my heart too. God Bless you & your daughter!

  35. mbogan says:

    Unfortunately, I can totally relate to this. My daughter got her first migraine at 8. She has suffered from them ever since. She’s 22. Thankfully hers a still episodic. And she does know many of her triggers. She hates to take medication so she is trying to control them through a healthy lifestyle and a strict sleep and eating regimine. Currently that is working for her. And I truly pray it sustains her the rest of her life.

  36. People love to say to me, “I don’t think I could manage a headache every day and then a migraine several times a week”. Well, I don’t have a choice but to “manage” it, today I woke up at 6am with my head feeling like someone stuck a railroad spike through my right eye. As I fumbled for my pre-sorted medication bundle, I thought of the grocery shopping I have to do later and how I would “manage” it. Blessedly my meds kicked in shortly and I went back to sleep. Now it’s a down to a dull roar, but I’m still in no shape to face the outside world filled with bright lights, bold scents and deafening noises. I’m here thinking of the groceries I have to get today before the sale ends and wondering if I gave my mom a list how much she’d be able to get right or wrong, through no fault of her own but sometimes I like to choose things when I get there. My tummy of course is always on strike with my migraine so food can be a necessity that never tastes or sits well after I’ve eaten it, so picking out what I want can be difficult. I feel the hum of pain behind my right eye and the stiffness in my neck and shoulders; and I wonder if the forecast calls for rain today? I bet it does. The human barometer, that’s me. I can hear this awful mid range hum inside my head and it’s almost maddening inside my head, ringing off the inside of my skull like some sinister symphony when I close my eyes and try to calm my mind. Please just stop, just go away long enough for me to put clothes on and get done what I need to. Tick tock, tick tock, the minutes are turning to hours and I’m becoming more stressed which only worsens my pain. I did too much yesterday, it dawns me while I write this….I washed the bed clothes and flipped my mattress, vacuumed and dusted some. Baked cookies and made dinner…way too much for my fragile body. Damn it, I wasn’t even thinking of today when I did all of that yesterday. I felt good so I got some long overdue things done and I did myself in. That’s another thing people just don’t seem to understand. One day I can be full of energy and life but then whammo, the next I’m paying for it like I ran a marathon for the first time. They don’t get that simple things like showering or doing laundry might just put me over the edge if I do them on the same day. It seems absurd to them and it did to me just 3 years ago when I was working every day and living a somewhat “normal” life. Now that I’m on disability and can no longer work or get out of bed some days of the week (migraine and chronic back pain), I’m reminded that life will never be what it was. I have adjusted mostly and still find joy, don’t get me wrong, my life is still great. It’s just days like today when I need so badly to do something and my body demands rest, that I wonder if I’m really “managing” it so well? The answer to that is…If I’m still here and I’m still able to smile at least once each day then, yes! I manage my life with migraine, some days it feels like I struggle more than others but I have too. I’m strong enough to do this, and I know it because I’ve done it every day so far.

  37. HK says:

    This is so close to my story. You are not alone!

  38. Meaghan Coneys moderator says:

    Hi Jessica Madore – thank you so much for sharing your experience with us. We hear you here at Migraine.com and we are definitely here to support you. Sounds like you have good days and bad days, but sometimes those bad days are really awful and even more so when things need to get done. I am sure it is quite frustrating to not be able to do what you need to do especially when life for you was “normal” 3 years ago. Please know you are not alone. Living and coping with chronic migraine can be challenging to say the least and often there is somewhat of a grieving process related to the loss of your life before chronic migraine. I thought you would the following articles helpful – https://migraine.com/blog/coping-skills-save-the-judgement-what-matters-is-finding-what-works-for-you/, https://migraine.com/blog/migraine-and-mindfulness-bruce-almighty/, https://migraine.com/blog/meeting-myself-where-i-am-migraines-mindfulness/, https://migraine.com/blog/the-well-of-grief/, https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/, https://migraine.com/blog/a-list-call-for-creature-comforts/, https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/. They gives tips for coping with chronic migraine, grieving, and self care techniques to use while experiencing an attack. Perhaps you will find them helpful. Again, thank you for sharing. We love hearing from you so please continue to reach out. Wishing you all the best. Warmly, Meaghan (Migraine.com Team)

  39. Shirley says:

    Thank you so much for articulating this! I’m living with almost daily migraines now and while many close family might understand I get this from others. I have had to tell people once or twice that I just don’t have any other choice.

  40. Tammy Rome author says:

    As I sit here reading your comments, I am in awe. When I wrote this article, I had no idea how much it would hit home with so many of you. Honestly, it was more of a rant. 🙂 Today I am resting with an ice pack wrapped around my head. My spring cluster headache cycle started a few days ago and those attacks have set off a nasty, unresponsive migraine attack. Reading your responses after a tough couple of days is helping me feel not so alone more than you will ever know. Thank you all for just being you!

  41. When I talk of my migraines it’s usually on a good day with a smile and a laugh and so I always get told I’m too cavalier and that maybe I’m not taking them seriously enough!? I smile and nod, brush it off and change the subject – what do they want!? To see me in a pit of depression? To see tears rolling down my face every time I talk of the pain I go through, the loneliness, the never ending cycle? Just once wouldn’t it be nice to show them the harsh reality that is migraine – but no. Because this is my journey not theirs. My burden not theirs. and I’d feel guilty if I ruined their day. I echo Tammy when I say and it’s not as if I have any other choice is it?! If I had one wish though, it would be for them to experience my worst migraine once and then see how they cope with it ….

  42. Macbeck says:

    People think I must be in pain. While pain is there, it’s mostly controlled by 2-3 dozen injections all over my head and in my neck every 13 weeks. Except right now – my insurance changed so my injection appointment is delayed. But I digress.

    My biggest problems are vestibular and optical migraines, which means sometimes I can’t wander beyond the 500 sq ft which still has my name on the lease. Sometimes my left eye doesn’t focus well – I see double at a distance not equal to my right eye. And sometimes I have to deal with both at the same time.

    So I struggle with whether or not I should give up driving because I haven’t driven more than 5 miles from home since January 18th. And one day I needed my neighbor to drive me less than 2/10 mile home because a migraine struck while doing laundry. (It was the fluorescent lights, thank you.)

    Because I don’t drive far from home, and because I often can’t drive I struggle with isolation and depression (I’m a household of one). None of my family lives near enough to visit with any sense of regularity.

    I did get brave enough this week to tell some casual friends to not believe the smile or laugh, but they do have a little understanding of how severe these D#&@ migraines are, that I’ve had to file for disability at the age of 53 because of them, and that I have no money to survive on while I wait for said disability.

    (Yes, if anyone is wondering, I’ll be starting counseling soon to go along with my antidepressants.)

    Thank you for letting me vent, and thank you for writing this so well!

  43. Pammy says:

    Thank you for saying this so well! I teach school, and I hear this all the time from my co-workers. My favorite is, “My mom used to have migraines all the time too until she retired, then they stopped.” Followed by suggestions from family members to reduce my stress or get more sleep. I just smile and say thanks while in my head I’m thinking, okay, I’ll just retire and take naps and long walks then. That’s totally feasible. There’s just this little problem that I’m not close enough to retirement age yet. Ah, but one can dream, right? As we say in the South, “Bless their hearts, they mean well.”

  44. disko says:

    Tammy wrote a poignant narrative of her frustration with the world, and you Pammy, write of the “simple solution” offered by the ignorant. The ignorance of the “one size fits all, therefore, conform or pay the price” crowd which describes the vast majority of the world, is a large part of the wall that prevents migraineurs from meaningful dialogue, (whatever that is, the truth for you is the entry bar)… The simple solution eg., retire and feel better, is in fact a convergence of events, which for most is not possible, for some within reach, others, a miracle in the making. Unfortunately, as a positive outcome it is incredibly rare. Yet, we hope for the outcome for one reason…because its possible. My question to everybody is “What would you have people say?” Nothing? Or, is there a balm contained in certain words or phrases from others? Or is it about the helplessness that renders even the most insightful observation from our loved ones meaningless without an escape from the isolation and pain? My years of experience as a caregiver to a family member hasn’t provided me with as much insight as I’d like into this question. So, my tack has evolved to say, “my respect for the fight you wage against the pain that respects no boundary is an inspiration to me, to continue to help if I can.” I say again, what can people say that would be helpful?

  45. Holly H. says:

    Tammy, you also brought me to tears. With constant/intractable migraine with aura, thunderclap episodes, and ocular migraines with increased speed and intensity of the 24/7 aura, just being functional is a victory. I go outside my apartment, and I’m smiling (although they can’t see my eyes for the sunglasses)… because in this moment right now, even with dragging the pain and aura around, for a little section of time, I’m there.

    Then I hear all those same questions as well from fellow residents in the senior tower. However, the folks that get me the most are the ones that insist because I have this moment, that “it must not be very bad for you because you aren’t curled up in bed and vomiting.” A close friend said folks around here have no idea what I live with, and how thoroughly the major migraine disorder affects me. What thought comes to me is, “Really?! Why don’t you give it a try for a few days and then get back with me.”

    I’ve just learned not to even try to explain, because it seems to me that these folks have already judged and come to their own conclusions. So, I just say, “After over 5 years at this level, I’ve had to learn some coping abilities on some level for every day and all day; I’ve had no other choice than to develop some coping abilities.”

  46. Melissa says:

    I hate hearing “you should see a doctor.”
    Do you really really think I walk through my life getting horrible migraines almost daily and have never seen a doctor. I’ve seen more specialists than I can count.
    I try to share with people the raw, true pain I suffer so there are more people who might be able to understand.

  47. selenawilson says:

    My actual response is, “Well, I keep breathing and waking up each day. I don’t have a choice if I want to exist, and I’m rather attached to existing.”

  48. Luna says:

    “IT’S NOT LIKE I HAVE A FREAKING CHOICE, NOW, DO I?!?!”
    Hadn’t thought to put it quite like that. I just say, “What choice do I have?”

    I don’t ever tell people “the raw, unfiltered truth.” Since I live alone no one knows. Few people comprehend how daily it is.

    Great article. Thanks Tammy.

  49. Jillian S moderator says:

    Great article Tammy!
    Whenever my mom sees me making my cambia cocktail she goes “you’re taking that again!?”
    Yes clearly I am! And maybe if it tasted like chocolate and wasn’t a fortune per packet I would take it for fun. But I am taking it because I am in agony! hate being questioned.

    Sometimes my friends will say “I feel like I give you a migraine.”
    This breaks my heart because of course it’s not them!! It just often happens in their presence.
    I wish I could be more in control of it.

    Jillian (Migraine.com Team)

  50. Stacey A. says:

    Tammy, you actually brought tears to my eyes. I don’t know how many times my frustration level hits so high that I just want to scream and slap someone when they say something like that.

    Thank you, thank you, thank you for writing this.

  51. Tammy Rome author says:

    Glad to help. It gets annoying, doesn’t it?

  52. D.T.MaC says:

    Thank you, you put into writing exactly what I (and probably millions of others) think and want to do with those who make that inane comment.

  53. Tammy Rome author says:

    Thank you!

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