Living with Behçet's Disease: When Your Body Becomes Your Own Worst Enemy

I’m going to be real with you today—I’m frustrated, exhausted, and just over it. Living with Behçet's disease, a rare autoimmune disorder, feels like an endless cycle of pain and discomfort. Just when I start to feel a little better, it comes roaring back with a vengeance. This time, the flare-up is particularly bad, and honestly, I’m at my breaking point.

What is Behçet’s Disease?

Behçet’s disease is a rare, chronic autoimmune disorder that causes inflammation of the blood vessels throughout the body. This inflammation can lead to a wide range of symptoms, including painful sores in the mouth and genitals, skin lesions, eye inflammation, and joint pain. The severity and frequency of these symptoms can vary widely from person to person, and flare-ups can be unpredictable.

In addition to the more common symptoms, Behçet’s can also affect the digestive system, nervous system, and other organs, making it a particularly challenging condition to manage. Since there’s no cure, treatment focuses on managing symptoms and reducing the frequency of flare-ups, but living with the disease often means dealing with chronic pain and discomfort.

On top of everything else, the disease has attacked my tongue yet again. I can handle the pain in my hands and other areas it affects, but the mouth? Especially the tongue? That’s a level of agony I can hardly endure. It’s incredibly painful to eat, drink, and even talk. And let’s not even get started on the horrible stench it brings, along with the thick, nasty slobber. It’s humiliating and debilitating in ways I can’t fully describe.

And, as if dealing with that isn’t enough, I think at 1:43 in the morning, the idiots next door finally turned off that damn music. I swear, sometimes I wish I was rich so I could escape to a secluded cabin with a big fireplace and a garden, far away from people. Maybe that’s just my introversion talking, but right now, it sounds like heaven.

I hate this body with a passion. It’s made my life hell. Growing up in the 90s, I had this vision of the future—like something out of The Jetsons—where we’d have all this advanced technology to make life easier, maybe even to replace failing body parts with new, better ones. Yet, here we are in 2024, and it feels like we’re still so far from where we need to be, especially when it comes to finding cures for diseases like this. It’s disheartening, to say the least.

Every flare-up is a reminder that my body isn’t under my control, that I’m at the mercy of something I can’t predict or prevent. It’s painful, it’s uncomfortable, and it’s isolating. I’m tired of being sick, tired of waiting for the future to catch up to the promises we were made. I just want to live without constantly fighting against my own body.

I know I’m not the only one dealing with something like this, and my heart goes out to everyone else who feels trapped in a body that’s working against them. If anyone has any advice, or just wants to commiserate, I’m here to listen. Sometimes, knowing you’re not alone in this struggle is the only thing that keeps you going.