When I struggle to find empathy for other migraineurs

I must confess something: I am not the best caretaker for fellow migraineurs. It’s not something I like about myself, but it’s the ugly truth.

Unless they are caring for an immediate family member with frequent migraines, this isn’t an issue that comes up very often for migraine sufferers. But I have somehow fallen in love with a man who has regular migraine attacks, and I have found that there seems to be a time limit to my ability to care for him with true compassion.

If Jim is sick for longer than a day, I find myself becoming more and more short with him. Can he really not just get up and get his own snack? Does he need to sleep all day? Suddenly all the things I try to explain to people about many of my migraine attacks—the drowsiness, the inability to move, the sensitivity to stimulae, and more—seem overdramatic in someone else, even the person I love and adore.

I have to consciously remind myself to exercise patience and loving kindness.

Do any of you ever find that you should be the sympathetic one but instead are becoming impatient or exasperated? How do you deal with this conundrum? I sure could use your tips and recommendations, cause I’m tired of my lack of empathy in a situation I above everyone else should truly understand.

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Comments

View Comments (34)
  • Franniep1126
    4 years ago

    I understand how you feel. Although I am not still married to him, my husband also had migraines. I tried to be compassionate but after a while i couldn’t go anymore, especially with two small babies. He was the same with me when I had a migraine. That’s part of the reason we aren’t still together ( but that topic is for another board!).

    I believe our reaction is a part of human nature, not the best. Even my mom, who was the most compassionate tender person I ever knew, would get her fill of helping others.

    I also believe that having the same ailment gets us into a been-there-done-that mood. We just have to remember all migraines are not the same or last as long– sort of like snowflakes just not pretty.

  • danielle
    6 years ago

    I know exactly how you feel! When my husband mentions that he is feeling sick I suddenly get super annoyed with him. IDK why.

  • Ellen Schnakenberg
    6 years ago

    Dear Janet,

    There are truly some physiological reasons why caregiving might be more difficult for you, as well as psychological reasons why some Migraineurs might have had a visceral reaction to your honest revelations. https://migraine.com/blog/why-do-chronic-migraineurs-struggle-as-caregivers/

    Understanding why these things happen is often key toward figuring out how to deal with those issues. Migraine disease is a journey, not a destination 🙂

  • marthaatkins
    6 years ago

    Martha Beck has a saying: I love you, I don’t care. It’s not a diss, rather a conscious effort to set a boundary between me and thee. I’m with Kelli, shoulds are a freakin’ death trap. If I should all over myself, I’m not accepting where I am now. If I can’t accept where I am now, I can’t get to a new place with any kind of expediency.

    If someone else shoulds all over me, they’re in my business. No one knows how I feel but me. All that is to say, Migrane Girl, no one knows your experience, the nuances of your relationship, the pain in your body but you – even though it’s a migrane forum, even though everyone has pain, the pain is unique. It’s yours.

    And…your boyfriend’s pain is his. You can’t know – even though you think you do, even though you have similar symtoms/complaints, it’s his. It’s not your job to assess it or judge it, just like it’s not anyone’s job on this forum to assess yours because it’s yours.

    I have a hunch the whole migrane thing is a metaphor for bigger issues in your relationship – boundaries, baby. The empathy you are trying to extend to him doesn’t need to go to him at all. It needs to go to yourself. Once you get that square, THEN you can share it. It’ll feel natural and easy. If it doesn’t, that means you need to have a look at where you’re disconnected from you.

    Wishing you well. Blow off the commenters who are in the comparison game. This ain’t that. This is about you finding peacefulness where you are. You can. Good luck.

  • Beth
    6 years ago

    Martha, you hit the nail on the head, so to speak. I think finding empathy for ourselves is really difficult and, at the same time, really necessary.

  • Teri-Robert
    6 years ago

    Wow! Well, I’m probably putting myself out there for criticism with this comment too, but feel I really have to step up here…

    First of all, The Migraine Girl was very honest to post what she did, and I find it admirable that she realized it’s a problem for her and turned to her Migraine community for advice.

    My second point is that it’s great that some of you understand what she’s saying and had advice for her.

    My third point is actually a question – What the heck is wrong with the online Migraine community?
    • People who don’t know Janet have made all kinds of assumptions about her here… that she “obviously have not had enough things happen to you in life to know there are worse things in life for you to have to deal with ‘taking care’ of a chronic migraneur…” that she “either really truely don’t love the man or you not a true migraineur,” and so on.
    • People are making all kinds of judgements about her, Jim, their relationship, and their situation – as well as pronouncements about what’s missing in her character.
    • The very people who slammed Janet and pronounced her lacking in empathy offered her none and don’t even try to understand the problem.

    So many were quick to judge and scold her, and of those people, none of you offered her any true advice.

    Janet realized she had a problem, so she came to us, her Migraine community, for help. And what did we do? More than half of us turned on her and criticized her instead of trying to help. Are any of us so naive that we think the Migraines themselves are the only things we every need help with? I would hope not. This sister of ours, who DOES have chronic Migraines and spends more days in pain that not, asked for help.

    Why did so many people feel you needed to criticize her for a shortcoming she was admitting and was asking our help with. Just give her the advice she asked for, for heaven sake. Did ANY of you stop to think how you made HER feel or how much better some advice might have made her feel? Did you really think being mean was going to be helpful?

    So, I ask again, What the heck is wrong with the online Migraine community? Our sister presents a particular problem and asks us for advice. Instead of advice, more of you criticized her for having the problem in the first place. You call that help? I call it crapola. Please, can’t we start just loving and supporting each other?

    Janet, what’s your pet name for him? A funny one? When he’s ill, and you find yourself starting to lose patience and empathy, bring that funny name and the story behind it to mind. It will make you smile and bring back some of that patience and empathy. Stick a mirror in the kitchen so when you go to get him a snack, you end up seeing yourself. That should remind you to smile and be encouraging with him.

    I’m sorry some people have been mean and negative. I really admire you for noticing that you have a problem and bringing it to the community for help.

    hugs,
    Teri

  • Julie
    6 years ago

    Wow, I just read this today after seeing the new post of Migraine Girl being afraid of being honest. I’m shocked. I’m so happy Teri came to her defense. I am quite sad that the migraine community jumped on Migraine Girl and that some of the comments were quite bitter and mean. I thought this forum was meant for us to be open and honest and to admit when we had a problem so we could get “help” and “helpful” advice and not be nailed against the wall and crucified. I thought this was a support group, not a bashing group. Now after reading these comments I am very, very leery about replying or posting anything in the future as I don’t want to be bashed or lashed out at. My last job I left because the people were so hateful and non-supportive and would critisize me constantly no matter what I said or did. I could never do anything right. I don’t want to go through that again-online or in person. That is a stress I cannot bear anymore. It tears me to pieces as I’m sure it does anyone else who gets attacked in such a way.

  • taralane
    6 years ago

    Thanks Teri for jumping in on this one. Those of you who have caretakers are lucky you have someone to do anything for you when you are suffering from chronic migraine disease. It was extremely brave of Migraine Girl to come to this community for help. All of us should know how hard it is to deal with our own migraine disease. Taking care of another person on top of that would send me out the window.

    I have no caretaker, just me. There are days when I cannot get out of bed and if another migraineur asked me to take care of them, I would probably feel the same way Migraine Girl does. I don’t think there is anything wrong here!

    Migraine Girl perhaps you and Jim can, when neither of you is in terrible pain, work out what needs to be in the house, and what systems need to be in place so that if store runs are needed, rx from the pharm (find one that delivers), or whatever is needed can be taken care of by the migraineur if the other person is not well enough to handle thee job. Care taking is a big, exhausting, all out effort that drains every emotional, compassionate and empathetic inch of your system. Go volunteer at Hospice if you want to find out about care taking. The point is to have back ups that you both can use that do not impact your relationship, because it is just “stuff”, logistics and nothing else. Once that is in place, I am sure you will both breathe a little easier knowing that each of you will get your needs met when you are in that awful pain place – if not by the other, then by the system you have set up that meets both of your requirements.

    I have been doing this for 44 years. It is not easy but it is very doable. And you well both feel much better for not having to rely on the other person for the basics, and just get some good old love from each other when you need it most.

  • Beth
    6 years ago

    Thanks, Teri. I’m glad you weighed in.

  • kelliejwalker
    6 years ago

    Hugs to you, Teri, for stepping up and so eloquently supporting Janet. Love your advice re: the nickname and the mirror!!

  • kelliejwalker
    6 years ago

    Ugh. I hate the word “should”, especially when it comes to feelings. We feel what we feel. That can’t be helped. We can’t control our emotions. The one thing we *can* control is what do in response to our emotions. If you feel impatient or exasperated, that’s ok. In fact, it’s perfectly normal. More on that below. Beating yourself up for feeling whatever you feel isn’t productive. In fact, it very likely just takes up more of the energy you’d prefer to be putting towards taking care of Jim. The important bit is what you do when you feel impatient or exasperated. If you can acknowledge it, “let it be”, and either give yourself what you need or schedule giving yourself what you need for a time in the near future, that may help free up your energy in the moment so you can take care of Jim. I hope that makes sense.

    RE: the impatience and exasperation being perfectly normal…

    We humans seem to have an *almost* unlimited capacity for caring for another when we’re in a good place. We have reserves of energy we’re willing and able to share. But, even in those best of times, those reserves aren’t endless. If we don’t step away and take care of ourselves and ask/allow others to do so, we’ll burn out. I see it all the time. I sure you do, too.

    In a situation where the caretaker is also struggling, it’s different. The metaphor I use when I discuss this phenomenon is swimming/drowning. You can’t save another person when you’re barely treading water yourself. There are times when we have to expect and allow the other person to fend for themselves until we’re strong enough again to reach out and help them.

    In your particular situation… I *completely* understand why you might feel impatient and exasperated when Jim isn’t well. You spend so much of your life dealing with migraines – what you eat, what smells you expose yourself to, physical activity (type & frequency), what you drink, etc. And, that’s just a short list of what you do to try to prevent them. Add to that how much of your time & energy are spent trying to get rid of and/or working through a migraine. Yeesh! The time you have “away” from migraines is so limited and precious. It seems very natural to me that the idea of having to deal with migraines when you don’t have one would be frustrating, exasperating, irritating, maddening, and all manner of other unpleasant emotions. Wanting to have some free time away from this “thing” that eats up so much of your life just makes sense to me.

    It doesn’t mean you don’t love Jim. It doesn’t mean you don’t want to help and/or take care of Jim. It doesn’t make you a bad person. It just means you’re human.

    I think you’ve taken the best first step – acknowledging how you feel. It will also likely help for you to find ways to express your frustration & exasperation – ways that you feel are safe, healthy, and productive.

    Oh, it also helps me to remember how I feel and what I want to do aren’t mutually exclusive. You can feel frustration and exasperation, and still take care of Jim – which I’m certain you’re doing already.

    I realize none of this is helpful in finding a way to feel more sympathetic. But, I hope it helps to know you’re not “doing it wrong”.

    Hugs & love!!

    Kellie

  • Beth
    6 years ago

    Great post, Kellie. Thanks for sharing your perspective. I, for one, found it very compelling.

  • judyclement-wall
    6 years ago

    I think it’s terrifying to admit publicly that you’re not perfect; thank you for being brave and honest and putting yourself out there. I truly believe our stories connect us, and our willingness to be vulnerable lies at the heart of our most meaningful connections. It also leaves us open to attack.

    That’s why vulnerability is so hard. That’s why so many of us retreat. Thank you for not retreating. Thank you for being brave enough to start a conversation. And no matter how you are criticized, know this: there are people who are reassured by your honesty, people who thought they were the only ones, who now know they aren’t.

    I don’t have a magic bullet for your real question but the mere fact that you are so self-aware, so wanting to be a positive, patient caregiver bodes well. (And I’m betting, the man you love loves you back precisely because you’re brave… and evolving.)

  • kelliejwalker
    6 years ago

    🙂

  • Beth
    6 years ago

    Migraine Girl asked for our help. Questioning whether she is a true migraineur is totally NOT helpful. Has anyone thought that maybe having her own constant migraines may be why she has trouble finding the empathy she needs to deal with someone else? I am sick so often with my severe chronic migraine disease that it’s a stretch for me to care for anyone else beyond a certain point. I honestly don’t have the reserves I need anymore. I try to be as loving and as empathetic as I can be, and sometimes it’s not enough. Migraine Girl, I don’t have any answers for you, but I totally understand and sympathize.

  • evelyn
    6 years ago

    I have to go with Louise here. You either really truely don’t love the man or you not a true migraineur. If you were a true migraineur, then you should have more patience for someone who goes through the same pain and life interruptions that come from having that kind of pain. Do you really think he wants to be in so much pain, he has to be in bed all day? Having to be in bed all day can also cause pain in the body because you you aren’t moving around. how often are your migraines and what number on the pain scale do you have them at? And I am sure he senses your attitude, impatience and lack of caring which just makes it worse for him because that can cause stress which means you are only adding more to the problem. how can you call yourseld “The Migraine Girl”?

  • Jaime Sanders moderator
    6 years ago

    Migraine Girl, I commend you on being honest about your lack of empathy for your boyfriend regarding his frequent migraines, however I find it extremely sad and unfortunate that you as a migraine sufferer yourself can’t find the compassion for him. I have many family members and friends who never had a migraine be 100% more understanding and empathetic to my pain. I think that you should really look at yourself to figure out why you lack that. I am a chronic migraine sufferer. I have had migraine disease for 26 years. I have chronic daily headache. My pain tries to stop me from living. If my husband acted the way you do I know for sure that it would negatively impact my pain. Have you ever considered that your lack of empathy towards your boyfriend during one of his migraine attacks actually makes his pain worse? You most certainly do not deal with the feelings of guilt that chronic migraineurs have. We struggle with having to be taken care of and don’t want our loved ones to have to bear our burden of pain. It seems to me that you are just adding on to his guilt by being frustrated and short with him. Be careful about how you treat him. Not being empathetic leaves the impression that you blame him for being sick. We never asked for this disease and unfortunately many episodic sufferers become chronic. Yes, you do need to learn patience. I wonder how your boyfriend feels because we are only getting one side of the story. I really do hope you stay cognizant of your behavior towards him and treat him how you would want to be treated during your episodes of pain.

  • Betsy Mauchley
    6 years ago

    I can relate to this blog post; I have chronic migraines and my boyfriend has cluster headaches. Even though I knew his pain level was excruciating, I would find myself being frustrated with him. Then, of course, I’d feel guilty about those thoughts after he was (and is) so patient and understanding. I agree with many of the comments: this was a brave post (thank you for helping me not feel like a freak!); and, you’re doing the best you can when you remind yourself to be compassionate. Plus, we’re not all natural born caretakers – I’m fortunate that my boyfriend is. And, we don’t know how we’d react in a situation until we’ve walked in another’s shoes, so judgement of each other should probably be withheld. Hang in there, everybody!

  • sherryledford
    6 years ago

    I do not think Louise is being hard on her at all. I agree with Louise. As a migraineur herself, how can migraine girl have so little empathy?

    Migraine girl, just how often do you have migraines? It seems to me not often, or you would be more empathetic. You knew up front when you began dating this guy that he had frequent migraines, right? Is he a chronic sufferer? I can not understand how so many episodic migrainers are not more understanding of chronic migraineurs. You know how bad the pain can be and all of the other symptoms that go with it. Imagine living with that every day of your life for years. Maybe the fact that you have never had to do that, or that you do get breaks from your pain make you less empathetic? Maybe you lack that maternal instinct? Yes, being a caregiver is hard, but you do get breaks, does he? My husband is my caregiver. I was eposodic when we met, and when we married. He had no idea what he was in for in the future, but neither did I. I am very thankful for all that my husband does for me and try to do as much as I can for myself. When I am not not in as much pain, I try to do nice things for him – make him a nice dinner, etc. Anytime in our almost 20 years together that he has been sick, I have done what I could to take care of him. That is what couples do. The only advice I can give you is treat him the way you want to be treated when you have a migraine and be thankful yours are not as often as his.

  • Louise
    6 years ago

    Diana Lee – I do not think I’m being hard on her. Sorry you feel that way. I have pain from trigeminal neuralgia 24/7 with migraines on top of that. I never let my boyfriend see me cry. Nor do I ever stop him from going out and having fun while I’m stuck at home with this condition. I guess you could look at it this way… Would you rather be the one in pain all the time With your boyfriend taking care of you or the other way around. Obviously not being in pain is the choice. You still get choices of working, going on trips, enjoying evenings with friends. The one in chronic pain may not. So that’s why I say if you are seriously complaining about your situation then you may want to find a less stressful situation. So, just FYI.. I would be totally hurt if my boyfriend wrote a blog about how difficult it was dating someone whose sick. Thankfully he has a little more class not to do so.

  • Diana-Lee
    6 years ago

    I think we all struggle with empathy at times, as evidenced by a not so supportive comment below. It’s funny to me that someone would be so hard on you, all the while lacking empathy for how hard it can be to be a caregiver.

  • kelliejwalker
    6 years ago

    Amen!

  • arden
    6 years ago

    Migraine girl, sorry you’ve received some less than empathetic replies… its seems that we migraineurs of all people should be the most empathetic to other people’s pain, especially migraine pain! But as you so honestly admitted, sometimes we are not. But I think you already have the answer when you say you have to consciously remind yourself. You are not a bad person or immature because you sometimes get impatient and short with Jim. You just forgot to be, didn’t remember to choose to be, kind and thoughtful. You already know the better way to be and act. You just have to keep replacing the inappropriate attitude with the better one. Its not easy and its a conscious struggle. Thinking how very much YOU would like to be handled with care and compassion during a migraine helps. Remember the good old Golden Rule.Listen to yourself and change the tone if you would not like it coming back to you.
    Dont be too hard on yourself. We all struggle with defects. Jim will probably forgive you. The good thing is that you recognize it, admit it and desire to do better.You are way ahead of the game. Try to see the really valuable and good in Jim when he is aching. Relate to that, not the pain and inconvenience of it all.
    Just a few thoughts after years of dealing with the same type of negativity in relationships. It does get better!

  • kelliejwalker
    6 years ago

    Love this. Such wonderful advice, Arden!

  • The Migraine Girl moderator author
    6 years ago

    Thank you so much for your kind and compassionate reply. All of it is very helpful, especially these words: “You just forgot to be, didn’t remember to choose to be, kind and thoughtful. You already know the better way to be and act. You just have to keep replacing the inappropriate attitude with the better one. Its not easy and its a conscious struggle. Thinking how very much YOU would like to be handled with care and compassion during a migraine helps.” <3

  • Louise
    6 years ago

    Migraine Girl.. Wow.. It sounds like maybe you should find a new boyfriend. Clearly you are not cut out for this. This man deserves someone who is going to love him and not whine about his chronic pain problem that he most definitely sign up for. You obviously have not had enough things happen to you in life to know there are worse things in life for you to have to deal with ‘taking care’ of a chronic migraneur. Life is constantly changing. Our luck is constantly changing. His answer to his treatment may be just around the corner. My advice is: buck up, grow up and worry about things that matter.

  • Diana-Lee
    6 years ago

    Being a caregiver is extremely difficult. Sometimes Cliff gets short with me, but we find a way through it. Both parties have to acknowledge the difficulty of the caregiver / care needer relationship and give each other the space to make mistakes and work on getting better at it.

    One of the things that helps us a lot is bonding by freeing our minds of the worries and strain by watching our favorite funny movies and TV shows together when we can. It’s a little thing, but it makes us feel like us and helps us let go of the tension.

  • The Migraine Girl moderator author
    6 years ago

    Thanks for the sweet reply. Jim & I do the same thing. It can be infinitely heartbreaking to see the person you love in so much pain–I think part of my struggle in taking care of him has to do with that. I hate seeing him in pain, and I redirect that frustration in what may be ineffective ways (getting impatient with him/his migraine instead of trying to practice more patient & loving kindness).

  • rose
    6 years ago

    My husband has them also, and I have noticed the same phenomena with myself. I think it has to do with the frustration and anger I have towards my own disease. Seeing his struggles brings up my own issues which lowers my compassion thresh hold. I’ve noticed that if I can treat myself with a little extra compassion during those moments, it strengthens my reserves. So I take it easy on myself, and end up taking it easy on him too. Good luck to you!

  • kelliejwalker
    6 years ago

    <3

  • The Migraine Girl moderator author
    6 years ago

    This here is some great advice–thank you: “I think it has to do with the frustration and anger I have towards my own disease. Seeing his struggles brings up my own issues which lowers my compassion thresh hold. I’ve noticed that if I can treat myself with a little extra compassion during those moments, it strengthens my reserves.”

  • juanitaschmidt
    6 years ago

    Migraine Girl, I understand what you are saying.Migraines are fairly new to me but my son has had them for 20 years. I’m really having a very hard time getting my meds right. Some people don’t understand my migraines and what they do to me. Not just pain but lots of other things. How do I deal with that? I need help!I get very upset,angry and depressed.

  • monikarich
    6 years ago

    Katy,you said something that perked my Ears,You said you were having musclee removed due to your Fibro can I ask why?I do suffer with Fibro and Migranes and it seems when one gets bad the other one follows ,so Im just curious.Never heard about that before.

  • Katy
    6 years ago

    I feel ya’ll my Husband once in a blue moon gets them but I suffer alot. Weather is my biggest issue. Winter is the worse sometimes my husband shows empathy but I also suffer with severe Chronic pain, Fibro, IBS. Im also have mild Bipolar disorder. There isn’t a day I don’t have pain. My doc is now limiting my pain meds. My SI isn’t responding well to the Botox so I may have to get the muscle removed. That scars me when they removed scar tissue on my elbow IT HURT worse than the first surgery. I can’t imagine removing my muscle due to my Fibro. They be cutting Nerves I’m scared that my pain will not be treated right. Migraines are being treated with Zoran and Naratriptan it seems to help mabe you can talk with your doc if you haven’t tried it. I wish you all Well!! Take care

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