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?