u/queenofthesoybean

TLDR: I am struggling with my mental health surrounding Behcets. What do you do to get out of this “funk”?

Hey everyone! I (32/f) wanna say how important it’s been for me experiencing Behcets and having this community to turn to when I have questions. The past two years have been so intense. I started showing undeniable symptoms of behcets back in July 2024. My doctor initially tested me for measles and nothing else. When I asked for further testing I was met with “why do you want to know what’s causing this?” Beyond frustrating. I ended up moving provinces at the end of 2024 and an emergency room Doctor was able to send in referrals which got me on track to diagnosis. My pretty much constant symptoms are fatigue, brain fog and joint pain. My flare ups look like large mouth lesions, tongue lesions, my lips look so swollen even if they aren’t covered in lesions as well (which sometimes they are). It’s hard to eat, swallow, talk. I get ulcers on my hands during every major flare up. This makes already existing joint weakness and pain in my hands even worse because now there are painful lessons in the joints of my fingers. My legs as well. I’ve only had one genital ulcer and I’m very thankful for that because it was incredibly painful. I also thankfully haven’t experienced any eye issues. Since moving and seriously!!!!!! advocating for myself hard I have a pretty good team of a rheumatologist, dermatologist, internist, ophthalmologist and a naturopath.
I know comparatively this doesn’t sound so bad but it’s honestly debilitating. I was just 30 years old when this started and now there are weeks of my life I am unable to go to work. I’m single and live alone supporting myself and a kitty. Cleaning and household chores can be difficult with such little energy. I’m accepted to school in September, I’m worried the effect behcets could have on that. Honestly, I’m just really struggling with it mentally. I’m a happy person and I love life. I struggled mentally as a teen and worked really hard to learn coping skills and the power of positivity but with this it feels different to fight. I feel like I’m slower, sleepier, in pain and being held back. I really don’t like playing a victim and I know others have it so much worse. Please if you struggle with this too, what have you been doing to keep your chin up? I’m sending you guys all of my love and I appreciate you taking the time to read my story.