Living with Behçet’s Disease: The Invisible Struggle

Chronic illnesses are often misunderstood, but invisible illnesses like Behçet’s disease come with an entirely different set of challenges. From the outside, many of us may look fine, but beneath the surface, we’re fighting a daily battle with unpredictable symptoms, relentless pain, and the emotional weight of knowing there’s no cure.

What is Behçet’s Disease?

Behçet’s disease is a rare autoimmune disorder that causes inflammation of the blood vessels throughout the body. It affects each person differently, but common symptoms include:
✅ Painful mouth ulcers that make eating and speaking difficult
✅ Genital ulcers that can be excruciating and embarrassing to discuss
✅ Joint pain that mimics arthritis, making even simple movements unbearable
✅ Skin lesions that resemble acne but are much more painful
✅ Eye inflammation (uveitis) that can lead to blindness if untreated
✅ Gastrointestinal issues, headaches, fatigue, and neurological complications

Despite these severe symptoms, people often don’t “look sick”—which leads to a frustrating lack of understanding from others.

The Emotional and Mental Toll

One of the hardest parts of living with Behçet’s is how isolating it can feel. Many of us battle:
💔 Judgment from others – Because Behçet’s is rare and not widely understood, people may dismiss our pain, assume we’re exaggerating, or say, “But you don’t look sick!”
💔 Mental exhaustion – The constant cycle of flares and remission makes it impossible to predict how we’ll feel from day to day.
💔 Medical gaslighting – Many of us struggle for years to get diagnosed, being told by doctors that it’s “just stress” or “all in our heads.”
💔 The toll on relationships – Friends and family may struggle to understand why we have to cancel plans at the last minute or why we can’t always be as active as we’d like.

Why I Hate This Disease

Behçet’s steals your energy, your confidence, and sometimes even your sense of self. It’s exhausting waking up each day not knowing if you’ll feel okay or if a flare-up will ruin your plans. It’s frustrating explaining over and over that just because I look fine doesn’t mean I’m not in excruciating pain. And it’s heartbreaking knowing there’s no cure, only treatments that may or may not work.

The worst part? It’s invisible. People don’t see the sleepless nights, the burning ulcers, the aching joints, the gut-wrenching side effects of medication, or the moments of hopelessness when it feels like the pain will never end.

My Experience with Otezla

I used to take Otezla, and I definitely felt changes in my body—I actually felt good for a while. But for me, and I can’t speak for everyone, the side effects kicked my butt.

I had severe mood swings, depression, and headaches so painful I had to be rushed to the hospital. It was unbearable. The moment I stopped taking it, I felt so much better, and the side effects disappeared. So, while it worked for me in terms of symptom relief, the side effects were just too much. But everyone is different—what didn’t work for me might be life-changing for someone else.

The Best Way to Treat & Manage Behçet’s

For those suffering from Behçet’s disease, having the right medical team is crucial. Because this disease affects multiple parts of the body, it often requires a team of specialists:

🔹 Rheumatologist – Helps manage inflammation, joint pain, and overall autoimmune symptoms.
🔹 Gastroenterologist – Treats any gut-related complications, such as ulcers in the digestive tract.
🔹 Dermatologist – Helps with painful skin lesions, ulcers, and any other skin-related symptoms.

Working with these specialists can make a huge difference in managing flares, finding the right medications, and improving quality of life. Since Behçet’s affects everyone differently, a personalized treatment plan is key to staying ahead of the disease.

Raising Awareness & Supporting Each Other

Even though Behçet’s is rare, we are not alone. Awareness and advocacy are key to ensuring better research, better treatment options, and better support for those of us living with this disease. If you have Behçet’s, know that your pain is valid, your struggles are real, and you deserve understanding, patience, and care.

For those who don’t have it but know someone who does, listen, learn, and believe us when we say we’re struggling. The best thing you can do is offer support, not judgment.

I hate this disease, but I refuse to let it define me. To anyone else fighting this battle: we are warriors, even when the world doesn’t see it. 💙💜 Spread love ❤️—because certain individuals want to drag us back to the dark ages, but we will prevail.