Many people who deal with frequent migraines post online during the attack. We often receive negative comments from others when we do this. To someone who only gets an occasional migraine or never gets one at all, this behavior must seem counterproductive. Once you understand why we get online, maybe our behavior will make more sense.
We don’t sit at a desk
Most of us use laptops, iPads, or cell phones to post online. The majority consensus was that we could rarely post online if we were forced to sit up at a computer. We are able to use portable devices that allow us to rest in a reclined position or even laying down in bed.
We make accommodations
Many of us have learned to dim the brightness of the screen to accommodate our light sensitivity. Several others wear tinted glasses or sunglasses to reduce our discomfort. A lot of us use this accommodation even when not experiencing a migraine because we’ve discovered that it helps prevent some light-induced migraines.
Not all migraines cause pain
Another theme I discovered is that we all experience varying degrees of pain, from the “silent migraine” with no pain at all, to the excruciating “10” that drives us to seek emergency medical help. A common misconception among non-migraineurs or those with rare episodic migraines is that all migraines are horribly painful and force the person into bed. That is simply not true, especially for people with Chronic Migraine. Migraine attacks actually begin hours before pain starts. Veteran migraineurs with decades of experience have learned to distinguish those early warning signs. Some of us “old-timers” will report a migraine and treat it in the early stages long before we get to the “oh my God, kill me now” stage. That doesn’t mean we never get horrific pain. Certainly we all experience some attacks that put us in bed for days, unable to interact with anyone.
We cope with the pain
For those of us with frequent or daily migraine, there was also a consensus that we’ve learned how to “push through the pain”. What might be a “10” for someone who has never experienced a migraine might be perceived by us as a “6”. Pain perception is very relative. If you’re always in pain, sooner or later you learn how to accomplish a lot of things despite the pain. Posting a comment online becomes “child’s play” compared to working, housework, child care, and the million other things we must do to keep life going.
We get bored
Another theme was boredom. Anyone who has experienced the slow recovery from influenza or a broken bone can relate. There is only so much resting and “taking it easy” a person can do before they get a little stir crazy. Despite the pain, nausea, light and noise sensitivity, after a few days we get bored just like anyone else recovering from a long illness. We are stuck at home, often in bed, isolated from family and friends. We are sick of Sprite and saltine crackers. The internet migraine communities offer us an outlet for this boredom. It is often our only entertainment and social life.
We need support
Speaking of social life, these support communities also offer us something else — validation. Most of us learn quickly that the world really doesn’t want to know every time we get a migraine, especially if we have one most of the time. Healthy people get tired of hearing about our pain, especially when there is nothing they can do to help. But what about our fellow migraineurs? That’s a completely different story. Want to whine about that non-stop migraine triggered by the latest storm front? There are thousands of people online who know exactly how you feel and will support your right to bitch. In fact, you can go ahead and post that ugly selfie of you with an ice pack wrapped around your head. We will tell you that you are a beautiful warrior. Experiencing support and understanding from others helps us not feel so isolated. When we don’t feel alone, we can borrow strength from each other to keep searching for better treatments. It motivates us to find good self-care strategies.
In short, when we post online that we are having a migraine it helps us stick with treatment, take better care of ourselves, experience less pain, and improves our mental health.