No one ever guessed that this socially-awkward child had autism. After all, she didn’t fit any of the stereotypes. She was highly intelligent, meeting all developmental milestones ahead of schedule. She was polite and articulate with seemingly good social skills.
There are a growing number of questionable, unproven treatments. Desperate for relief, many of us will seriously consider one or more unproven treatments. At best, we will get lucky and find some relief. At worst, they may create harm or delay us from getting proven treatments.
There is no shortage of people trying to capitalize on the increased awareness of migraine. False claims of a cure are all too common and tempting. It’s an ugly result of greater public recognition. The more we talk about migraine, the more questionable claims will pop up. Migraine isn’t the only disease that is a target.
We have a tendency to wear emotional and mental blinders, forgetting that the rest of the world is suffering so much more. It’s easy to get caught up in our own problems and lose sight of the big picture. We complain about the limited number of headache specialists and the high price of treatments, but it could be so much worse.
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.