There are many things those of us with migraine disease wish people without it understood. It isn’t just a headache. It is severely disabling. Symptoms can come and go.
We express our desire for this understanding often and in many ways, from Twitter conversations and Facebook groups to Instagram posts. But it isn’t just those without migraine that make us feel misunderstood. Sometimes, it is others of us with it.
The uniqueness of migraine can separate us
Living with migraine is an exercise in coping with the unpredictable. Symptoms and severity can change from one attack to the next. Frequency fluctuates. Medications stop working. The disease rarely presents in exactly the same way for any two of us. At times, this uniqueness can make us feel lonely even in the midst of those whom we feel understand the most.
In general, there are more similarities than differences between our experiences, which is why communities like Migraine.com are so important. We take comfort in knowing we’re not alone. It gives us hope. Occasionally, though, we still feel separate. So today I want to make a move toward lifting that veil.
What I want you all to know about my migraine disease
Head pain is not my most disabling symptom. This is hard to get even my neurologist to understand. Yes, the pain can be excruciating, but it often isn’t. Not anymore. I’ve grown accustomed to a certain level of pain over the years, and when it gets over that threshold, I have a variety of medications I use to manage it and bring it back down to around a five. Of course, there are days when even the strongest of my pain meds don’t work, and on those days I long to slam my head against the wall repeatedly. But those days don’t come often enough to make the pain my most troubling symptom. (I have my pain doctor to thank for that, I know.)
Distraction is key to my quality of life
Many of us have seen the meme floating around about how a person experiencing a “real” migraine attack couldn’t possibly be posting about it on Facebook. My attacks can last for days, weeks, and even years. It is vital to my sanity and quality of life that I do more than isolate myself in a dark room. I try to do whatever I can to distract myself, especially when the pain is so bad no medication can touch it. This may mean watching TV, going online, or even doing something with friends. (The ones who won’t misinterpret the grimace of pain that’s likely plastered across my face.) Basically, whatever I can tolerate. It’s so much better than lying in the dark and wishing my head would just explode already.
I am not worried about medication overuse
I know the symptoms of MOH, but I also know I don’t have it. Further, I’ve tried every single preventative that is currently available, and not one of them has worked. At this point, I do what I can to manage my symptoms (vertigo, double vision, nausea, pain, etc.) well enough to function. For me, that means taking opioids, and occasionally it means taking them more than twice per week.
What about you? What do you wish the rest of us with migraine knew or understood about you and your experience with migraine disease? Please let us know in the comments. I look forward to reading each of your responses and getting to know you all a little better.