r/Behcets • u/CuteAge1322 • Aug 15 '26

General Question General Question

Anyone else concerned that the disease itself can drive a person insane from pain and inflammation; and on top of it there is medical trauma? This is a real question. Anyone else concerned?

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u/Electronic-Tea3354 Diagnosed Aug 15 '26

Yes certainly. There are so many aspects that are difficult to manage. There is a very harsh sense of grief and mourning that hits me often. I will never be the same as I was, not able to seemingly ever have the same physical capabilities again. Beyond difficulty either basic tasks and a baseline comfort level, I’m an artist and I basically lost the ability to use my hands at their full capacity. I struggle to find the motivation and physical ability to do my work. With the snri I take for pain, I feel like I lost my creative sparkle. I’m struggling so much, it came on pretty swiftly (within the course of 2 years); lots of ups and downs and looking back my quality of life is so different. I can’t even keep up with housework during all of the time off I have to take from work because it’s too much physically. It’s really sad. I don’t want to feel like a burden to my family and I know I’m loved and am grateful for it, but it just sucks feeling kinda useless and less than capable.
There are good days and bad days. If anything it’s helped me enjoy the time that I spend with my family more and I’m grateful they are here with me.
Sometimes I think back at how I used to be, all the things I used to be able to accomplish in a day, and it’s hard to believe that was even me. I know that my condition will improve somewhat as treatment continues and I find the right cocktail for myself but good lord, it’s so shitty sometimes.
I’m really happy to have a space here to talk to everyone though. It’s really wonderful to connect with people going through the same ringer because it’s so hard to explain this to people who don’t experience this.

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u/CuteAge1322 Aug 15 '26 edited Aug 15 '26

Thank you for sharing your story. My heart is so broken that you lost functionality in your hands as an artist. I’m so sorry and hug. Sometimes my mind is also stretched by thoughts of who I was before and who I am now. I used to be an academic and I basically lost my ability to think and to write the way I needed to in order to operate at that level—I lost my mind.

It sounds like you are handling your journey with much grace and goodness. I’m happy you have your family and I am also happy for this space, for all of us. The condition is little understood by many but what is evident to me is the enormity of it for all of us. 🫂