I May Be Rare, But I Am Not Invisible

 

Today is International Trigeminal Neuralgia Awareness Day!

I have had TN since I was seventeen (2010) but did not receive my official diagnosis until I was almost twenty-six (2019).

Because I understand such a chronic pain condition known amongst medical professionals as “the worst pain known to mankind”, and a condition without a cure, I know how important it is that we spread awareness for TN.

I also understand how the lack of having a diagnosis for so long impacts someone, especially as a young patient. That is why I bring awareness, volunteer and continue to share my story. Today may be TN awareness day, but for those of us with TN, every day we are aware of it.

Today is for the warriors who are fighting TN, the Survivors who have experienced TN and the Angels who have passed due to Trigeminal Neuralgia being known as the suicide disease. That’s why a cure is needed.

So what exactly is Trigeminal Neuralgia (TN)?

Here is what TN is in a nutshell from an article I wrote a few years back called We Need a Cure for Trigeminal Neuralgia

“Trigeminal neuralgia, also known as tic douloureux is a neurological pain condition affecting the trigeminal nerve, specifically the fifth cranial nerve. There are two trigeminal nerves, and each nerve is connected to the brain stem. Each are responsible for the function and the sending of sensations to each side of the face. When working correctly, most people don’t think about, let alone know, what the trigeminal nerve is. And likely, most have never heard of the tongue-twisting named disease called trigeminal neuralgia (TN).

What TN does, is it tells the brain that everything hurts. Talking, eating, brushing your teeth, the wind, water, a gentle touch: everything that is an innocent and normal function or sensation on the face becomes a threat. The reaction is attacks (episodes) of sudden, sporadic and shooting chronic pain. Sometimes it feels like you are being electrocuted. Other times, it is a chronic, burning pain that feels like someone is putting a blowtorch to your face. Then, there are moments it feels like someone is punching you over and over again with an iron fist. Or you’re being stabbed with a dagger. There truly is no one way of explaining what it feels like… Except for the worst pain you could experience, times a hundred.

Trigeminal neuralgia is rare and that is another reason why not many people know what it is. The only ones who tend to know what TN is, are a) those who have this horrendous disease, b) those who love someone with it, and c) some medical professionals.

I’m one of those who has this painful condition. Like I said, trigeminal neuralgia is rare. For those under the age of 40, it’s even more rare. For some of us, it’s extra rare. My TN showed up at age 17. I can agree with the medical professionals: it is one of the most, if not the most, painful conditions known to mankind. I promise they were not kidding. I definitely wouldn’t recommend TN. I don’t have to know what it feels like to be struck by lightning; I have trigeminal neuralgia.”

Today is Trigeminal Neuralgia Awareness Day, but for me it is every day. I may be rare but I am not invisible.

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