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Why Do Chronic Migraineurs Struggle As Caregivers?

Migraine is an unforgiving disease for many reasons. Now, take a Migraineur and put them in a caregiving situation, and trouble can start.

As patients, pain makes us very selfish. We don’t mean it when it happens, but the fact is that severe, unrelenting pain takes patients to a place where we often don’t even recognize ourselves anymore. It’s a place where a normally compassionate, empathetic, sympathetic person suddenly finds themselves the center of their own attention simply because the pain signals our brain is giving us are doing their job.

And what is their job?

To warn us that something isn’t right. To take our attention away from everything else in our world so we can save our own lives. Pain’s job is to do this to the exclusion of everything else in our world including other necessary body functions. It is doing it’s intended job in our lives.

Now, pain doesn’t always work quite the way it is supposed to work however. Sometimes it is there for no explainable reason. Sometimes it won’t go away when the danger to our body and lives is over. Such is the case with chronic pain conditions, including chronic Migraine.

Our nervous system isn’t set up to handle this unnatural experience. Human beings are by nature, predatory. Our bodies are designed to be the danger, not be IN danger. The bodies of prey animals are uniquely and well designed to handle stress very easily. However, our bodies are not set up to deal with being stressed very well at all, especially ongoing stressors, no matter if they are emotional, mental or physical, such as severe pain.

When stress and pain occurs (interpreted by our bodies as danger) things can go wrong. Stress hormones like cortisol and other adrenal and brain chemicals designed to give our bodies the instantaneous ability for superhuman strength to fight or run away from whatever the problem is (called the fight or flight response) take over our bodies beyond the few moments in time they were designed to help us. This overuse of the response and hormones and chemicals associated with it creates a cascade of other chemical imbalances within our bodies over which we cease to have much if any control. When this cascade goes on long enough we suffer physical damage to the cells of our bodies, and sometimes to our brains and how they were originally designed to function.

When pain has gone on longer than a few minutes, we began to act unlike ourselves. We may first become stressed and easy to anger. Our memories may not work quite right. We become anxious, exhausted, and eventually… Depressed. Think of a tiger, cornered by something that is going to eat it, trapped in a tiny cage instead of being in a normal forest atmosphere where they can escape. Migraineurs are that tiger…

As a result of the pain induced damage to our bodies, we may develop other related health issues that serve to compound the problems of this increased stress load. Our immune systems falter and sometimes fail. We get sick. Depression and exhaustion leads to inactivity and deconditioning which further aggravates our body’s inability to deal with the constant pain and health threats.

Soon the nervous system begins to anticipate the pain before it is really there. We begin to feel pain from stimuli that shouldn’t normally cause pain, called Allodynia. Our entire body is on alert. We can’t sleep nor eat appropriately. Our digestive system fails because the fight or flight response stops the digestive process so that our frugal bodies can handle more serious matters at hand and can escape what is causing the pain. Blood is shunted from extremities to large muscle groups for escaping, and to important organs needed only for survival.

As a part of the Migraine process which itself is neurological in nature, many things stop working properly in our central nervous system too, which is compounded by the imbalance created by the pain itself. It is like a snowball rolling down a hill. The longer it rolls, the bigger it gets and tougher it is to make it stop and disappear.

A raw fact is… chronic Migraineurs typically make poor caregivers.

Most often this is frankly beyond our control. It isn’t that we don’t want to do a good job when someone else in our family is suffering, but the processes going on inside our bodies make it nearly impossible at times, because our bodies are not able to give us what is not there any longer due to the physical stress we have been undergoing as a part of the experience of being sick ourselves. The longer this goes on, the more of a problem it is for the Migraineur.

As a chronic Migraineur I discovered long ago where my new set of limitations are.

I was a caregiver for my Grandfather just before he passed away at age 91. I was the primary caregiver for two high needs children who were also Migraineurs- one chronic from before grade school age and both with life threatening and life altering health conditions. I also care for a large handful of chronically ill animals I love who, without constant monitoring and care would die.

When we learned that a particular genetic cancer is part of my husband’s family, I became obsessed with taking the best care of his body and health as possible because, after watching his father die from this same cancer, I realized that physically, I could not do what was needed if he got sick too. My body can only do so much and I figured prevention was better and easier than trying to fix a problem later.

When my hubs needed consistent monitoring I began to get frustrated. It didn’t matter that this is beyond his control. I wanted him to take care of himself better to further minimize his cancer risk despite the fact I could only minimally help him with that. I spent the last 40 years of my life with chronic pain and the last 27 of them as a caregiver. I am so sick so much of the time as it is and need my own help, I didn’t want to be his caregiver too. I also didn’t want to lose my care partner.

Was this wrong for me to feel that way? Of course! Was it understandable for me to feel this way? Of course!

No matter how hard I try, and even succeed at understanding intellectually, my own situation blinds me to the situation of another. I get aggravated. Discouraged. I become afraid. Frustrated. I feel helpless in the roll of a caregiver for someone with a chronic health condition because the reality is that there is so little I can do to be helpful while still caring for myself, and watching them in pain makes me angry because of my own incompetence and sheer physical exhaustion and limitations. I don’t want this responsibility.

Ironically, this has given me a lot of insight to how my hubs must feel as my care partner.

Just as each patient’s experience with Migraine is different, so will their experiences differ as caregivers. Although chronic Migraineurs understand better than most the needs of Migraine patients, the genetic aspect of the disease means we often find ourselves simultaneously filling both roles, and too often failing, at least to some degree.

Additionally, when we are suffering and feeling frustrated at our own lack of appropriate care, it is hard not to be judgmental about the situations of others when they discuss their caregiving shortcomings. We don’t feel compassion for someone who isn’t a good carer because we are angry we aren’t getting good care. Our pain makes us look at things from a skewed perspective based on our own experiences and biases. We use our own experiences and assume they must be the same as everyone else’s in a similar situation.

Psychologists call this Projection. The human affinity for projection is why I told you about my husband’s cancer scare instead of my children’s Migraines… To give a different perspective and hopefully create easier understanding.

Projection is a normal part of how we as human beings view the lives of others and a tool we unconsciously use throughout life for learning. We need also to remember however, that it is a biased perspective and not a true view of real events. It also blinds us to those actual events and can make it both easier and more difficult to be compassionate. Understanding how each of us uses projection in our lives will help us be better patient’s and caregivers.

As a leader in the Migraine.com community, I see all of these points pop up from time to time. When we are members of an online community such as this, we are often also taking on a small piece of the role of caregiver for those other members of the community. As we have just read, this can be both easy and difficult. As Migraineurs we may do an amazing job one day, then fail miserably the next. The most important thing is to understand why this happens, and then take steps to improve as caregivers, no matter where that role of carer is taking place… At home, or in a Migraine community.

When you are Migraining, how do you handle your caregiving responsibilities? Do you find your feelings about caregiving are different when you think about your children vs. a spouse or other adult? Now that you know what projection is, do you think being aware of it will help you become a better caregiver or care partner or community member?

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.

Comments

  • lori
    7 years ago

    Ellen, I hope you don’t mind that I’m re-blogging your article at Dear Ms. Migraine. Thanks a bunch!

  • Ellen Schnakenberg author
    7 years ago

    Lori, thank you for the encouragement and linking to the post :). I am glad it resonated with you!

  • Julie
    7 years ago

    I am glad this article is posted. I feel so fortunate that my migraine disease progressed to the chronic state that it has AFTER my parents illness and passing. If this had happened during that stressful time when they needed me the most and when I had to be the one to forsee the managing and division of the estate that I had to fix up and sell I would not have been able to have done it. As it is now I can barely take care of myself. I would have been useless at the time that was going on. This Chronic Migraine disease has taken a big portion out of my life to the extent I cannot contribute much to the outiside world and can barely function day to day. And I have to rein myself in daily to control the sadness and yes the bitterness the reality of that has caused. The family on the other side of this disease do not realize the toll it has taken on a person until you totally break down when you reach the end of your rope and the depression takes a hold of you completely. I speak of my experience, of course, and have to be hospitalized as an intervnetion. But still they cannot come to terms grasping how much it hurts you physcially and emotionally that it robs you of so much because you can’t do for yourself or for others when in your pain daily and dealing with other comorbidities as well. This is a hideous disease by all means.

  • tucker
    7 years ago

    I was at the doctor today going over the migraine “diary” and explaining the days of exhaustion (ie, I just HAVE to sleep whether after work or for 16 hours straight on a weekend) vs the days I’m good to go. We have no idea why these cycles are happening on top of the migraines. So this complicates the MOM part. And Arden, I have chronic migraines/chronic daily headaches – by definition 15/month. My migraines aren’t horrid right now but I’m on 3 RX preventives and 3 OTC preventives thru the neuro. It’s the daily 3-4am wake up calls that are getting me right now – ugghhh!!! It’s not a migraine but doc said stop treating it and it should go away – not what I really wanted to hear… But just 10-11 years ago my migraines were quite sporadic and by the time my kids were about 5 I had daily headaches and slept whenever I wasn’t working. Now I’ve added a heart condition and a few other problems in just 2 years and boom, I’m ready to be over all these illnesses and back to 15 yrs ago but with the kids.

    My boys are 13 and functional in the kitchen since I’ve been teaching them from the get go, but I have been buying my husband’s groceries since before we were married! He’s pretty much only good for leftovers and sandwiches. I work part to full time but have always seemed to make it work for them. Lunches, trash, bills, the whole household! (Just to be fair, he does his fair share of other tasks) So when my husband woke me up twice last weekend from a migraine to take care of things he certainly could have done, I was crazy mad! Really? It’s time to grow up buddy and go get a pizza for dinner or something.

    But as for sympathy. I do have sympathy for the kids – one has migraines and throws up with his. We even put him on preventive meds a couple years ago. The other has asthma and it can get pretty bad at times so I worry about that. Hubby… man up. While he has been hugely supportive of me thru some other medical problems I’ve has the past couple years, I’ve mostly dealt with life as it comes and I don’t ask for much more than sleep. So if he’s sick or has a headache and can’t get up and take some advil or get a snack b/c he’s hungry and dinner is late, well…… He’s 45 yrs old! If he has a real problem, we’ll deal with that as it comes. I also have empathy for several coworkers. I think it helps us to know that we are all hurting and caring about each other. We all still have to come to work and worry about one of the sickest ones when she is in the hospital. She is tough as nails but I worry about her alot.

  • arden
    7 years ago

    Very informative. A few comments: I’ve been reading this site for months now and slowly began to feel because I just got a couple migraines a week I wasn’t in the major league here and couldn’t compete with the chronics, whom this site seemed not to favor but just to be the majority voice. Probably silly of me but I’ll admit it was off-putting and I turned off the site for awhile. I know you gals are trying to help all of us and are the serious sufferers. I can not possibly understand how a chronic goes on with life. Those of us who are not chronic can learn from you but like I said, its a different ball game.
    Nextly, your analysis of the pain machine is so interesting. I have always suspected that a migraine pain was just as you said: a huge alert that something is wrong. Since learning that migraine is much more than the pain I have had to modify that. But perhaps it is still true that something else is out of whack when the pain hits, either in the food department, the social arena, the emotional drama or other area. There may be “an explainable reason”, we just have not found it yet. My hope is that fiddling around with diet and supplements and having the modern wonder drug triptans handy I can avoid becoming a chronic. It is working, as between time of headaches gradually gets longer.
    I know these comments are off the subject. I have a chronic pain of a husband – oops, he has chronic pain and it is easy to care for him. “Take your meds and go to bed, honey.” There, done.
    Thanks for all your care via this site.

  • taralane
    7 years ago

    This is a great article! Thank you for posting it. I was the primary care giver for my Mother for 3 years while she was dying from a very slow-moving cancer. The last year and a half were particularly trying, and she was not an easy patient. I did my best, but there were days when I just could not do what she wanted, or needed, and I had to stay at home and tend to my own needs. The experience exhausted me totally. When she finally died it took me a long time to get through my grieving process, and through the exhaustion from the 3 years of taking care of her. After her death I also entered into a very bad period of time where my own migraines became intolerable, and I often could not get out of bed for days at a time.

    When others helped, I was extremely grateful, but when they did not, I did the best I could for myself. Dealing with another person’s pain is not an easy thing to do, as I knew from my experience with my mother. Asking a friend for help seemed like too much to expect except when I was really in a bind and needed some kind of transportation to a doctor’s office for an out-patient treatment. Even that was hard to get from a friend, and I would rather they had said “no” than hit me with “you need to find cab companies to do this” along the drive. That just made me feel bad.

    Now I feel my care giving responsibilities are mine, and mine alone. If someone else needs my help, and I can provide it, I do, but when I cannot, I say so, and don’t feel bad that I cannot do everything. It is part of my acceptance of the disease, which has been hard to do. I wish I could get my old self back, but if I cannot, I have to protect the one I have so I am not overwhelmed by other people’s care taking needs at the expense of my own.

  • yaiyai789
    7 years ago

    I was a care taker for my mother and also am now a care taker for my husband. I find that there are times that I just have to give in to the pain and lay down, My husband still is able to help me if I ask for help. Even though his ability is limited. I find that I’m able to deal with my migraines much better if I do something for someone else. But there are times I must be by myself. I have a dog that helps me when I get to the point when I need to be alone. I don’t feel that I’m a caregiver to those who post on this site but that they only share with others which helps us who suffer with migraines feel we are not alone. I have found that if I’m able to shead a few tears it helps with the pain and I’m able to keep going. Having to double check everything I do. Most of the time I don’t do any thing like write checks etc when I’m in great pain. The botox injections worked the first time and I though I had found the answer to my problem. But now it only works for half the time,(injections every 3 months). But I’m thankful for those good days.

  • chitiakahenry
    7 years ago

    Interestingly, I find I make a better caregiver with my worse migraines because of the mood alternation. I am actually calmer and can sympathize easier; doesn’t mean I can think any faster or clearer, but the sympathy does help my family. Dealing with a child with neurological needs of her own, my daily focus is often on her rather than me. I tend to focus on me when the pain is too much, either migraine or elsewhere in my body, for me to effectively care for my child and the simple act of picking her up is impossible. At that point, I do everything in my power to keep caring for my daughter until I can take the time out for myself. Sometimes that means I don’t get relief until she goes to bed; I’ve learned to shrug it off and deal, as much as that can be annoying at times. I’ve also learned to take it a day at a time. Some days are good, and I can get out and do everything I need to. Some days are bad, and I’m cranky and snappy. Some days are horrible where I just cry and keep going until I either can’t go or I have a chance to get relief. The best I can do is learn from my bad days, and then go from there.

  • terri
    7 years ago

    I do have a problem, not necessarily with projection, but with resentment. Why does there have to be a contest to see who’s hurting worse to see who gets any rest? I’m pretty sure that the sniffles vs. the third day of a migraine (even if it’s only a “7”) is no contest. I’ll do the best my body will allow to help anybody that’s not capable (pet, kid, etc.), but I do resent someone who is clearly able to take care of themselves expecting me to cheerfully care for them.

  • sydneypaige
    7 years ago

    It’s somehow really helpful to know that this is a normal reaction, thank you for writing this article! I have a difficult time being sympathetic and helpful to my kids when they’re sick. For some reason, I always assume first that they’re exaggerating or faking. Why do I do that!? I want to simply be encouraging and loving and supportive to them, in whatever way they need – no matter what they are physically feeling.

  • alig0118
    7 years ago

    When I am migraining, I am still the main caregiver, bread winner, and person who cares for the household. My spouse helps from time to time, when the pain and effects of the migraine are so debilitating I can literally do nothing. My projections are deep seeded and all around bad. No one offers to take care of me, get me something I need, or even just be quiet. I am extremely sound sensitive and can hear every word of every conversation with my family member or on TV, even with earplugs.

    I have horrible guilt about how the migraines affect my parenting before, during and after an episodes or episodes as I have chronic migraines. Lately when I have a migraine, I am so fatigued, the pain in so intense, all I want to do is be in my room alone and cry. Yet I can’t. I’m always on as a mom.

  • kristisprague
    7 years ago

    I also have that awful guilt that rises when I am having a painful day and can’t parent the way that I used to or in ways that I want to. It has been very tough for the kids. They know that they can’t count on me 100% because so many days, I have had to care for myself. I have missed numerous school events, had to cancel plans more times than I can remember. On top of this, I have been criticized by family and my former husband for not trying hard enough! I have so much compassion for each one of us. Thanks to everyone who has shared an experience and to the author of this article. Kristi

  • Ellen Schnakenberg author
    7 years ago

    It’s so hard isn’t it?! Some days there was no choice. Thank goodness for good friends who helped me through those days, and a husband that understood and took time when needed. Not everybody has that luxury though.

    I remember one day coming to the realization that my kids were learning from everything they saw and experienced even from an early age. Every interaction was a lesson. Knowing they had/could get Migraine made it super important for me to do my very best at showing them that even though life with Migraine (chronic) isn’t what we wanted for any of us, it was still valuable and worth the effort. What’s more, they are very good at caring for others because they learned what they lived. Doesn’t make it easy. Just makes it really, super important 🙂

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