Be Kind

This is Behcet’s Disease.

It’s often an “invisible illness.” Systemic inflammation, severe fatigue. It’s an autoimmune vasculitis. So it can cause lesions anywhere you have blood vessels. This most often occurs in soft tissue, like the mouth, eyes, genitals, skin.

For me, the oral lesions are most problematic. Sometimes I can look totally normal from the outside, but my tongue, the inside of my cheeks, the roof of my mouth, gums, and throat are a wreck.

And then sometimes I look like this. Fat lip, and loads of lesions along my jaw, chest, and forehead. But I’m actually fine. A little tired maybe, but this mini flare, though more visible than usual, looks worse than it is.

When people see me like this, they cringe and say stuff like “Poor thing!” I appreciate the concern. But remember, there are people fighting invisible illness all around you. They may look fine on the outside. They may have learned to hide their pain. Or their pain may not be physical- but it’s no less debilitating.

So always be kind. Everyone is struggling with something.

3 thoughts on “Be Kind”

  1. I ran across your IG page and subsequently your page about Behçet’s disease. I have not come across many people on IG with Behçet’s, so I was quite surprised to run across your page. I just wanted to applaud you for sharing your story and being so candid about your own struggles. I really appreciate it because I also have Behçet’s disease and it has quite literally ravaged my whole body, inside and out. Actually, complications from the disease have almost killed me, but I have only mentioned Behçet’s disease one time on my Instagram page and I did not share anything about how it has affected me. So, I just wanted to say thank you for having the courage to share your story and helping to bring awareness to invisible illnesses, like Behçet’s disease.

  2. Thank you so much! I rarely catch my comments here, so sorry for taking so long to reply. Sharing about my experiences is part of how I process my struggles and find meaning in my own pain. It’s incredible how people open up and share their own stories when they see you can relate, then we all feel less alone. Praying for your healing, and looking forward to connecting on IG!

  3. Hi, I came across your blog when researching this disease. I thank you for having the courage to post your experience. I’ve been suffering from mouth sores around and in the mounth nose and gums for about 3 years. They seem to occur when I damage the area of the skin or am under a lot of stress. About every 2-3 months I experience a breakout, and they last anywhere from 1 to 3 weeks. I’ve also been experiencing blurred vision and dizziness more frequently, and if those symptoms continued for several days my breakouts follow. I visit my primary physician regularly and maintain my annual physicals and tests. At first I thought it may be hepatitis of some sort, but I’ve tested negative for all STDs. I guess my question is, have you ever experienced it in your nostrils and around your nose and on the roof of your mouth and gums? Do they prescribe medications for it and are they effective? I apologize for being long winded, but appreciate your input!

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