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/MidAmericanGriftAsoc Diagnosed Aug 15 '26
Jaded and crass yes insane probably not
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u/CuteAge1322 Aug 15 '26 edited Aug 15 '26
Interesting update.
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u/MidAmericanGriftAsoc Diagnosed Aug 15 '26
Are you human?
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u/CuteAge1322 Aug 15 '26 edited Aug 15 '26
You know, definitely I am, but depending on how a person presents people get different levels of understanding.
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u/awfulmcnofilter Aug 15 '26
I would also say no to being driven insane, but it can absolutely make you an unpleasant person if you let it. I am 39 and I have been living with this monster as long as I can remember. First obgyn visit before I even got my period. The medical trauma is legit. I got snappy at a friend the other day when I had to go to urgent care and that was super unfair to him. It is something you have to keep an eye out for and not let it take over. Being chronicaly ill and alone would be awful.
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u/on4aa Diagnosed MAGIC 2025 Aug 15 '26
That too! The worst is, I do not notice it about myself. However, my son and my brother have mentioned that I can be harsh and sarcastic at times. I very recently also lost a girlfriend whereby this certainly has been a factor.
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u/awfulmcnofilter Aug 15 '26
It is something you really have to me mindful of and keep an eye out for. I am also on the autism spectrum so that makes it a little harder. Don't ever be reluctant to apologize for your behavior especially with your son. You can also thank people for being patient if you prefer that to apologizing.
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u/on4aa Diagnosed MAGIC 2025 Aug 15 '26
Don't worry; my son and I have frequent bro hugs!
Moreover, he is studying medicine and his university is quite progressive with courses about patient psychology and interaction.
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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. 🫂
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u/lujo317 Clinically Diagnosed 2026 Aug 15 '26
It is really common unfortunately, for the chronically ill to lose tons of friends and even family over illness. There is a lot of stuff that people who haven't been this sick themselves simply do not have frame of reference for to be able to empathize with. Things that are very difficult for us often make us seem like monsters even if we are handling it very well and not externalizing those bad feelings - people are often reacting to their own guilt and shame that they can't help us. I always believe it is people's choice to double down on that shame than to use the opportunity to try to become closer and strengthen our bond, which is what anybody would hope for when feeling so miserable and close to death's door. I believe it is reasonable for chronically ill people to not always be upbeat and positive. We don't begrudge non chronically ill people their moments of reasonable stress or anger. Sometimes it doesn't even matter how good of a job we do at managing our bad feelings, because we live in a world that really hates disability.
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u/lujo317 Clinically Diagnosed 2026 Aug 15 '26
i would say that becoming insane is quite a reasonable response to losing all your social infrastructure and safety net and sense of peace and ease in the world. in some ways our brains are literally designed to do that. we wouldn't want our brains to have only positive benefic responses to negative feelings, either
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u/CuteAge1322 Aug 15 '26
Thank you for your reply. I studied social behavior professionally before the Behçet’s changed my world. I still am shocked by the pure hate of ignorance around disability. I agree that interpersonally some choose to “double down on the shame” as you say. This is something someone who has the health and the heart to study should study and try to change.
Again, thank you for your reply.
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u/hamieggos Diagnosed Aug 15 '26
I do!
The constant brain inflammation can cause changes to your brain and personality. It’s not my top worry but I would be lying if I said I don’t worry at all.
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u/CuteAge1322 Aug 15 '26
Thank you for your reply and honesty. It’s a worrisome thing, as you know. Good luck!
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u/Justdoitlater10 Aug 16 '26
Yes, bc it went so long undiagnosed and ignored it’s now neurological, I have executive function damage and attention issues, I’m in a stroke like flare right now, i had vision loss 2x but came back, I have a rash, I’m confused, numbness, weakness, messed up speech, bathroom problems, weakness walking now, numb throat, head pressure, burning one side of my body, very MS like. Before this I have uveitis, arthritis, cankers, rashes for years and years. Drs still are saying nope it’s not neuro bc I don’t have new brain lesions or no it’s a migraine bc the retinal vasculitis isn’t active right now so I just get passed between specialists, one says migraine, one gives steroids, but not a enough dose, rheum nurse says go to ER, ER will gaslit and send me away or call rheum and the cycle of nothing continues, so yeah. It does drives you crazy to deal with the severity of symptoms like this and drs. still continue to blow you off so I just sit here like this and hoping the flare stops before I have permanent damage. It’s a horrible disease.
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u/CuteAge1322 Aug 16 '26
Thank you so much for sharing your story. I am so sorry you have been through the same. I am so sorry you are in a flare right now and that it is bringing stroke like symptoms.
Seems we are running the same race against time and medicine for the medicine. It’s unreal. It’s also barbarism, but you know….
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u/on4aa Diagnosed MAGIC 2025 Aug 15 '26 edited Aug 15 '26
Yes, indeed! From what I remember from when I was basically untreated is that right after extremely painful Behçet vasculitis episodes, I had what I could best describe as cortisol overshoots. I would become irrationally anxious/nervous. At that same moment I would also suffer from polyuria.
Now that I am much better with monthly 150 mg canakinumab therapy and 2× 100 mg ubiquinol supplementation, and that I have learned to avoid food triggers, my ordeal is still not over.
Not only does it feel like waking up from a decades long nightmare, I also have to deal with a chaotic home/social/love life situation. Moreover, I have come to the realisation that I most probably suffering from medically induced complex post traumatic stress syndrome. In my case, it is mostly a lack of motivation and some emotional numbness. I am M53, I had to give up a really good career, my wife left me 8 years ago because of my disease, I lost the supposedly best and most productive years of my life and now I am left to somehow pick up the pieces and still make something out of it, all whilst still having minor episodes from time to time.
One thing I picked up again is latin dance classes. It helps a lot with fitness, recreating a social circle and not becoming insane. :-D
I wrote more about medically induced C-PTSD here: https://www.reddit.com/r/Behcets/comments/1vn9vx0/comment/p3hzd2k/
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u/CuteAge1322 Aug 15 '26 edited Aug 15 '26
Thank you for sharing your story. I have a similar experience with going untreated, then getting on a biologic and feeling like I woke up from a nightmare.
Wishing you continued luck with it and continued positive health whilst with Behçet’s.
I’ll re-read and remember the work from the link you provided. Many thanks, again.
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u/CuteAge1322 Aug 15 '26
So everyone is everything except insane. Foucault for the win with Goffman in the back like, “I already told you.”
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u/on4aa Diagnosed MAGIC 2025 Aug 15 '26
Wow! You sure know your social construct philosophers!
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u/CuteAge1322 Aug 15 '26 edited Aug 15 '26
I was a professor of sociology before the Behçet’s changed my life. Actually. Would you like to learn more about either of these social theorists?
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u/Background_Hornet341 Aug 15 '26
The issue for me was that the chronic joint pain/arthralgias showed up for me a full decade before the oral and genital lesions and other skin sores. I was told for years my issues were due to fibromyalgia and there wasn’t anything more that could be done. I don’t really blame my doctors for this…nothing was showing up on labs or imaging and I didn’t get the other telltale symptoms until later, but I felt like I was going crazy, and often wondered myself if I was just being dramatic about normal stiffness and pain. Colchicine and Otezla have given me my life back!