Hope, Fear, and Trying ANOTHER Migraine Medication
Recently my headache specialist started me on yet another preventive migraine medication. Not surprisingly, my emotions have been all over the place! Anyone who lives with migraine, and especially chronic migraine, can probably relate to the need for HOPE. For me personally, this is a driving need. I want to hope. I want to see the potential for feeling better. I want to know that I’m not necessarily stuck with frequent, severe attacks for the rest of my life. But… I’m also afraid to hope.
How is life different for those without chronic illness?
Maybe for some that doesn’t make sense. For most people who do not live with a chronic disease, life is somewhat different. If they get temporarily sick, they see a doctor, get a diagnosis, receive the necessary treatment (hopefully), and expect to get better. There’s little ongoing fear after diagnosis, perhaps some frustration before they feel better. Maybe some annoyance at how it has disrupted their life.
Why do people with migraine need hope?
However, for those of us who live with migraine, the scenario looks very different. For many, just getting a diagnosis was a huge challenge. Then, finding a doctor who knows how to treat migraine can be near impossible. Even if you get past both those hurdles, there are the ongoing insurance access issues that make us want to pull our hair out and give up! Then beyond that, EVERY new treatment option can cause a whirlwind of emotions. There is often a weird combination of fear, doubt, disbelief, excitement, and… well… just plain old patient burnout. Through it all, there is a need to hope. Let me explain what I mean, and maybe you will relate to those feelings too!
What emotions do new treatments bring?
Every new treatment I try brings fear in its wake. Will this cause intolerable side effects? Will it make another medical condition worse or interact with other medication? Will it just simply fail to make a difference? It’s challenging to believe that something WILL work when so much else has failed. It’s hard to even consider that I WON’T have nasty side effects. So, doubt and disbelief get layered onto the fear. Those feelings are insidious, and a little voice in my head says, “This is not going to work.” Or even, “Nothing is ever going to work; you should just stop trying.”
Why am I dragged down every time?
It's not true! I know, and hopefully you know also, that we should NEVER STOP TRYING. What has happened in the past doesn’t necessarily dictate what will happen in the future. So why do I struggle with this negativity? What is it that drags me down time and time again when hope is so important? To put it succinctly: patient burnout. I’m exhausted from the endless task of doctor visits. I'm discouraged from treatments for migraine failing me. I'm weary of fighting with insurance and worrying about being able to afford the treatments I need. I'm fed up with the emotional rollercoaster of hope followed by failure again and again. And, the darkest cloud over all of this is the stigma at living with a disabling disease that most people still think is “just a headache.”
How do emerging treatments fit in the equation?
The amazing thing is, that even in the midst of these negatives, resiliency raises its head. I get hopeful when learning about new treatment options being studied. I get excited each time something novel is FDA approved. When trying a new medication or medical device for the first time, I choose to dream of a life that is not controlled by this disease. I choose to think, “Maybe this will be it! Perhaps this one will be my miracle!”
So I hope. Again, it is a driving force for me! I accept that things may not change much, at least in my lifetime, but I also make the choice to hope that it will. I make the choice to hope that my life won’t always be governed by this monster. That there will come a day when life will look very different! I hope that one day the dedication of all those doing research will bear sweet fruit.
So let me know, do you battle with some or all these emotions? Do you find it hard to hold onto hope? What would a “different life” look like for you?!
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