The ‘Headache’ of Having an Undiagnosed Disorder

“Why fit in when you were born to stand out?” — Dr. Seuss

I know that I’m unique. I’m pretty confident in that statement. I’m my own kind of sassy, sarcastic, goofy, lovable and kind. I have a laugh people could pick out from across the room. I have a hidden rapping talent that sometimes is revealed after a few cocktails. I’m the only blonde in a family of dark-haired half-Italians. I like these parts of me that make me stand out.

Except, there are parts of myself that set me apart from the rest that I’m not necessarily a fan of. In regards to my headache disorder, I’ve never fit under one label. I don’t have just migraines, or just tension headaches, exercise or menstrual headaches. I have all of them – sometimes more than one at a time.

And some of these headaches have been diagnosed officially, while others I’m still on the search for their true diagnosis and “title.” While I’ve been clinically diagnosed with episodic migraines and narcolepsy, I have never really gotten a 100 percent clear diagnosis of some of my other headache disorders. Some doctors have called them “new daily persistent headaches,” some have called them “chronic daily headaches,” while others have called them migraine headaches.

I tested and tested, and then tested some more. All resulted in the same thing: I have a very rare headache disorder that can be classified as a variety of terms.

For people who don’t have a combination of headaches due to unknown causes, and more so, for people who don’t experience any headaches at all, I’m sure it can be difficult to understand that when I say I have chronic headaches, I don’t mean that I get the occasional migraine.

There are no words for the amount of gratitude and love I feel toward every person, whether close to me or not, who tries to help me in some way or another on this journey of mine. But I would be lying if I said it isn’t more frustrating to hear, “Oh, I get migraines, too,” or “You should try acupuncture, that works for my headaches,” and the likes. What is impossible to explain to people who aren’t in my head is that there are so many contributing factors to my headaches. So many. I have found some factors/triggers and treated them, but I still have a multitude of “mystery factors” and triggers left unsolved.

After starting my blog and respective Instagram account known with titles of “The Headache Heroine,” I was overwhelmed by how many people I came across and spoke with who are dealing with headache disorders. However, I’ve come across maybe two out of hundreds and hundreds of people who have headache disorders that sound like they are experiencing a situation somewhat similar to mine. Everyone else has been able to classify their diagnosis. They’ve been able to mark their disorder and claim it in their name. They have chronic migraines, or tension headaches, or occipital neuralgia, or cervicogenic headaches, and the line is drawn there for those people. But see, I can’t claim anything that I can’t find.

Being unique means being able to stand up and say that you, and you alone, possess something — some trait, talent, skill, object, experience, etc. — that no one else has. It’s safe to say that I’m not afraid of ever losing my ability to stand out.

Follow this journey on The Headache Heroine

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images