Invisible Pain
Living With Chronic Migraine
How do you describe something no one can see? What if this something has devastating consequences on your personal life? It makes it difficult to be in a relationship, to parent, to go to school or to work. If you are lucky and have health insurance, you have been to one doctor after another until you found one who listened to you. Really listened and understood how much pain you have, how often, and how it was robbing you of your life. This provider will have ordered a barrage of lab work and imaging and studies you may not have heard of to pinpoint a diagnosis, sometimes by ruling others out. Diagnosis in hand, you are not out of the woods because then comes the Wheel of Fortune where you try this treatment plan, then that one, hoping one of them helps. These days there are lots of permutations to work through. Buy a vowel. Guess a consonant.
This is my story of living with chronic migraine since elementary school.
And if you don’t have insurance, you manage symptoms the old-fashioned way: caffeine and Excedrin. Lots of it.
No one can see the pain the way we see a broken arm or a surgical wound, but if you look, you can see the symptoms, and they lead to stigma not present with somatic pain. During an early phase of a migraine attack, called the aura, many patients experience aphasia. You know this as slurred speech. This difficulty in processing language (both speaking and writing) does not put your best foot forward in the workplace or in relationships. I hate when I am called out on this. I can feel the words are not coming out as intended. I also feel the migraine attack coming on. The combination increases my level of distress.
The funhouse experience does not end here. Aura can also include dizziness, vertigo, disorientation and confusion.
Someone observing this could mistake you for drunk. So, in this regard, the pain makes itself visible, but not in a way that is compassionate to the patient or a boon to your personal life.
Now add in the commonly-know symptoms: pounding head and nausea and vomiting. Pretty soon you can fill in a picture of a lazy, ne’er do well alcoholic who misses a lot of work.
On the opposite end of the spectrum, you have your fellow citizens-familiars and those less so-remarking “it’s just a headache.” This is the wrong thing to say to someone who suffers from migraine. A bit of research will teach you that migraine is a complex neurological disorder that can last from hours to days (my record is 12 days). It begins with the Prodrome Phase up to 24 hours before you experience headache pain. During this time there are mood changes, trouble sleeping, and the most troubling of all-difficulty concentrating. Next is the Aura Phase (not experienced by all) which happens about an hour before you realize the headache itself is coming. As I mentioned, some patients slur their words. Some have muscle weakness or changes in their vision. Some experience ringing in their ears. Some, like me, experience numbness in their face which feels like a kind of temporary paralysis. This is the first symptom to appear and the last to leave and I believe contributes to my aphasia. These are all neurological symptoms separate from “it’s just a headache” and all of them interfere with your ability to function.
Next comes the headache attack with its relentless throbbing pain. This is usually on one side of the head. When I was younger, the vomiting episodes were so violent I had to go to the emergency room for rehydration. Now I just suffer from severe nausea.
Let’s not forget environment. Most of us retreat to a quiet, dark room when we are in the throes of the headache phase. Sensitivity to light, odors, and sound adds to our misery. We don’t wear perfume, and we recoil when you wear too much of yours. Aromas we normally would enjoy from cooking become repulsive and bring on nausea. Gasoline fumes, fumes from most any household cleaning product, air fresheners, cigarette smoke-gag!
If sunlight or a flashlight or headlights or mirror angle catch our eyes at the wrong angle, it can trigger instant trouble. The crackling of a potato chip bag, lawnmowers, children playing, even conversation in another room feels like pain to us when we are under attack.
Many, including me, react to changes in barometric pressure. I always know when it will rain or snow because I can feel a migraine attack coming on when the weather changes.
Imagine how it feels to go through life with so many sensory triggers to such violent pain and suffering.
Finally, the headache with all its attendant symptoms releases us. But it does not feel like the dawn of a new day. It feels a lot like a hangover. We experience extreme fatigue, neck stiffness, and have what they call “brain fog.” Do not ask much of us. We are depleted from the battle.
Some resentful souls might think we are seeking some sort of gain out of our disorder like shirking our duties without consequences or using these so-called “headaches” as an excuse to get out of social obligations. Balderdash!
Let me tell you how it really is. We are like the ducks paddling furiously underwater, not allowing you to see that anything is amiss above the waterline. We are getting up in the middle of the night with screaming babies then before dawn to make lunches for school-age children. We are working parents, PTA parents and trying to practice the self-care needed to manage this disease. We are making dinner and opening the window to clear our heads of the smell of food. We are helping kids with homework and making sure they are tucked into bed with a story. We plan date nights with our spouses and campouts with the kids. We hike, ski, kayak, fish-all of it beyond the best of our ability.
All of this knowing we might have to cancel plans at a moment’s notice. But we do it anyway. And many times, we do it in pain because we don’t want to let that pain define or control our lives. We get used to letting people down in our lives. That makes us sad. We try to hide that too.
If you talk to a person with migraine, you will find that because of the stigma, we have gone underground. Not one of us wants to be accused of being lazy or spoiling the fun. We don’t want to be watched over like some specimen to see if our situation is getting better or worse. Do we need to lie down or leave? We want to be left alone with the pain, to manage it on our own terms with whatever medications and tools we have available, and function as best we can when we have an attack. We do give it our all until we cannot.
That does not sound like a lazy, ne’er do well to me.
There is a deep-seated value that minimizes women’s pain and migraine pain is no exception. Although migraine affects women preferentially, many men also suffer. Regardless, all pain should be taken seriously by providers and if you look at the history of migraine back to the 1500s (which I have), you will see the origins of the idea that women are chronic complainers about headache pain. This led to a dismissive attitude. Apparently the first doctor I sought help from had a 16th century philosophy. When I reported I had headache pain almost every day of the week, he told me no one had that many headaches. It was more than two decades before I sought the help of a headache specialist and told her about how much pain I had and finally started treatment.
Taking this argument further, the idea that only white women in the middle and upper income classes get migraine attacks is equally balderdash. What is true is that our black and brown brothers and sisters in other income classes often cannot afford the medical care of the “stigmatized white class.” They also cannot afford the luxury of taking time off from work. They are not part of the studies. They do not have access to the newest medications. The stigmatizing of one group leads to the discrimination of others.
While you are dismissing us and shooting us the major side-eye or gossiping behind our backs, it all impacts our mental health. We feel isolated, misunderstood, excluded. Your unwillingness to learn about our disorder causes us to feel invalidated. We may second-guess our symptoms and start to question whether we are over-reacting.
We are not. We are trying to adapt to your expectations.
Dr. Elizabeth Seng, Associate Professor of Psychology in the Ferkauf Graduate School of Psychology and an Associate Research Professor of Neurology at Albert Einstein College of Medicine helped conduct a study of 59,000 people with migraine (“The Unique Role of Stigma in Migraine-Related Disability and Quality of Life,” published in Headache: The Journal of Head and Face Pain, 02 Nov 2022). The study revealed a vicious cycle between migraine and stigma. According to Seng et al, when the migraine attacks repeatedly disrupt a person’s life, others begin to discriminate or throw shade against them. Over time, the person believes some of the stereotypes about themselves: I am not a good parent/good employee/good person. This added stress decreases physical and mental wellness, a perfect recipe for more migraine attacks. And more ammunition for stigma.
You can see where this is headed.
Sometimes the combination of medication, good sleep hygiene, gentle exercise, attention to hydration and as many self-care routines as there are individuals work well. Sometimes they work well for a while then stop. And other times it is impossible to find anything that makes a dent in the number of headache days each month. Less than 15 is the goal. I log as few as 10 and as many as 20. But today I have fewer days of severe migraine so I may be down, but not completely out.
We can view living with any form of chronic illness as a diminished life and there are still days I look at the glass like that. But I have been practicing setting the intention to make the most of whatever pain-free time I do have. Time to enjoy family and friends. Time to travel. Time to write. Allowing myself to feel joy, pain or no pain.
I am also doing something about the stigma. I have just started advocacy training with the nonprofit Miles for Migraine www.milesformigraine.org to raise public awareness about this painful, disruptive, stigmatized disorder.
Less stigma...fewer migraine attacks...less stigma...fewer migraine attacks...
Love, Alice
