Chronic Migraine Awareness

Chronic Migraine Awareness would like to thank Joseph Mazzone for sharing

New Daily Persistent Headache (NDPH; a constant headache that never leaves) has been the defining factor of my life since the day it started on July 24, 2016. It’s very similar to the feeling of a migraine except it doesn’t end. With 70,000 hours straight of debilitating pain I can say it changed every aspect of the way I live. I have had to adjust my entire lifestyle around what I can and cannot do with this condition. From wearing sunglasses inside, to missing family gatherings and events, to not being able to finish high school in person, and having my life revolve around doctors appointments. The journey has been a difficult one filled with potholes, stop signs, and road blocks. It’s hard for people to really understand what I’m going through when they look at me and see someone that looks completely healthy. They can’t wrap their head around what’s going on especially when I’m often smiling through the pain. But my facial expression is just a mask, because it’s easier to pretend to be okay than to try and explain my situation. Not even certain medical professionals like doctors, nurses, technicians etc. take it as serious as it really is. Most of them haven’t even heard of NDPH. Despite 39 million people in the United States living with migraine there isn’t much funding put towards these types of headaches.

Often looked at as an “incurable disease” but something is only impossible until it’s accomplished. History has proven this time and time again. I personally have felt the need to talk about this issue primarily for two reasons. The first being that since it’s an invisible disease, we have to raise awareness so others can see the effects it’s having on people’s lives. Unless it’s affecting you or a loved one it’s often turned a blind eye to. Secondly, not many men talk about this issue or any health issues they have because it’s shamed upon in our society. There is a stigma that men should be strong and not talk about their physical or mental health. But one of the strongest things a person can do is have to battle through a war with their own body. I can’t tell you how many times I’ve heard from people that it’s just a headache. It’s not a headache, it’s a debilitating disease that we suffer in literal darkness, often confined to our rooms.

Music has been my medicine throughout the years, it’s something I can do by myself and without any lights. It can also be extremely quiet when you’re playing an electric guitar unplugged. This has been the way I have had some identity throughout the years other than being a “sick person”, I am a musician. It’s given me the strength to occasionally go up on stage
and perform. Even if that means laying in bed for the next three days from the aftermath of putting on a show and pushing my body to its limit. Hopefully by making this proclamation I can prove to others living with migraine that they’re capable of more than they know and that I, along
with several others, see them for the warriors they are. Until recently I was very confidential about my illness. I want to make them feel less alone, showing them that I’m willing to walk side by side with them. Even if I have to come out and put myself in the public eye and show my struggle, so be it.

I want to say a special thanks to Nevada State Senator, Julie Pazina. Without her none of this would’ve happened and I wouldn’t have the opportunity to share this with the public. We need more government officials who are willing to recognize invisible illness.

If you would like to share your story please email it to kristen@cmaware.org