Migraineurs are often the target of unfair patient-blaming. Many of us get defensive when others suggest we might be to blame for our own suffering. Some have been so terribly hurt by patient-blaming that they resist any suggestion that they might be capable of improving their quality of life by making changes in their lifestyle.
Now that I know migraine is a neurological disorder, the weird symptoms make sense. There are biological reasons for all of it. This knowledge is a good thing. By recognizing the symptoms I no longer question my sanity or blame myself for non-existent character flaws that are really just symptoms of the disease. My self-esteem & confidence improved when I got educated about migraine.
My routine was thrown off balance like a ship tossing in a storm. Sometimes all you can do is hang on, hoping you don’t get tossed overboard. Before I could move forward, I needed to wait out the storm, assess for damage, make repairs, and right the ship.
My experience was foreign to them and they never did understand. Some were even cruel in their responses. Migraines made me an outcast with my new family. I wish that I could set them straight. I wish that they would listen and try to understand life from my perspective. After all, they seem like reasonable people. If they only knew the truth.
There is no one-size-fits-all Migraine. Sometimes a patient will have symptoms that are so unique to appear as though it is not migraine at all. Perhaps you have migraine or know someone who does. To borrow a phrase from autism advocacy…If you’ve met one migraineur, you’ve met one migraineur. That’s how different we are. Even if you didn’t count our personalities, talents, weaknesses, family history, social environment, and all the things that make everyone unique we’re still an ecclectic group.
We didn’t have much to work with — just aspirin and Advil. The idea of preventive therapy or more aggressive abortives were ideas I wouldn’t be introduced to for at least five more years. I had learned enough to know that I needed to treat an attack at the first sign of trouble. Nobody knew about the risks of medication overuse.
I managed to develop critical thinking skills, despite the influence of certain conservative-backwoods-redneck elements of my hometown. This is in no small part to the heroic efforts of teachers. My earliest introduction was to that lovable renegade, Dr. Seuss. I didn’t realize how influential Seuss had been until I started reading to my own children. The moral lessons are disguised by creative wit and I am grateful for the entertaining indoctrination.
Migraineurs have an acrimonious relationship with our own brains. We see our brains as the cause of our troubles, an enemy to be defeated (or destroyed). After all, we are told that it is within our brains that all the trouble starts. Neurotransmitters, coritcal spreading depression, overactive pain receptors, hypersensitivity to stimuli…it all happens in the brain.
A lot of people call Migraine an “invisible illness.” I disagree. It is most certainly not invisible. The problem is that there is not enough awareness about the condition. If more people understood what it is to live with Migraine, then many would recognize the signs. It is not “just a headache”, and inconvenience, or nuisance. It is a serious neurological disorder with no know cause and no cure. There are symptoms all the time, not just during an acute attack.
“Cutting off your nose to spite your face” happens when we focus on being right or fair despite the negative personal consequences. For migraineurs, there are a lot of opportunities for this to happen. Right or wrong, fair or unfair, sometimes we have to play by someone else’s rule in order to get what we want. It can be difficult to swallow our pride and do what is effective in order to get what we want.