Dylan the potato

I've been thinking a lot about the psychological toll CH can have on someone. Even before CH suicidal thoughts always seemed to follow me wherever i go. I always had my doubts in myself. I've always had doubts i was strong enough to be able to keep going. I had trouble coming to terms with having CH and that it even existed. The pain was always a reminder that this is real. That i have this. That too many people have this. I'm still pretty new but I'm not quite as helpless as i was before i first joined I've been finding my way. I don't have much in the way of super helpful advice for anyone or even much to say that's very noteworthy as i haven't quite gotten the hang of all this yet. Still at the very least i want to say to everyone who's new to this or that is struggling in general please hang in there. Stay strong and don't give up. We have to take this all one day at a time and keep pushing forward. You are not alone. Don't doubt yourself or your resolve. You ARE strong. I see so much unity in this community and so many people helping each other out whether it be with advice straight up emotional support or both. This is an awful thing to have but its brought many of us together. That is something and whenever i feel i have no one who understands i like to read what people are up to here. For everyone out there,you are an ox...a strong,resilient,antique breaking ox.

Well...yours unfortunately seems to be a rather complicated situation. I'm new here myself. didnt know what it was even while having my first attacks. Ive had it since i was 18 and managed to get an official diagnosis a couple months before my 20th birthday. It seems to take a while longer for others. Like CHfather said we aren't sure if its CH. We here cant diagnose you obviously if you don't know if it is...but i will tell you I'm so sorry you're going through this. Not knowing and having a outright diagnosis can be very difficult...and not knowing where to start with pain management and finding some form of treatment is as well. I still struggle with figuring out what to do and have a ton of trouble coping but am making progress. Especially after joining up here. I hope the very best for you and i think i can speak for many of us here that whether it is or not we support you in finding your way. Stay strong and hang in there.

HEY THERE! Welcome. I'm a bit of a newbie here too though my accounts been pretty dormant. There's plenty of great people and I'm sure you'll fit right in here. I'm not as knowledgeable or experienced as most but there's plenty of advice many others here can give you.

Well he certainly sounds like a great friend to have. Good for you. I've met people who'll outright say its ridiculous when i try to talk about it and make a list of what they've dealt with and others who'll stop and listen to what i have to say. Really even just having an open mind is a great deal of help for any person with any problem. It at least gives them someone to talk about it with

No shame in it at all,and haha wow

I'm sure for all of us its a perfectly natural response when it comes to feelings of vulnerability and helplessness. The feeling of having everyone's attention on you can be frightening. I know if im getting hit i want to hide away. Physical pain aside its taken a very profound psychological toll as it obviously would on anyone. I find that I'm depressed very frequently in the moments I'm not in pain. I'm paranoid when i leave my home and I'm scared to death of other people having eyes on me if i get it.

Oh ok thank you so much for being so helpful.

Thank you so much. Yeah social events its either rough being the only one not intoxicated or people seem to try and to push you into it. I suppose that's why we get on here. To swap advice and speak with others who also have it.

First off i want to thank everyone here this is really the best I've felt emotionally for a while now. I am in a cycle now..its kinda what pushed me to get on here. I'll try to be as involved in the community as i can.

It definitely is not easy talking with people but it is nice when they at least try to understand. It is really nice to actually talk to people on the issue. Thank you so much for the kind words

Well CHFather i can understand it being such a common issue with CH. If i didn't have it im sure id have been a bit skeptic. I feel as though if i tried they'd never actually watch or read through it though i could try. I just also dont want people to think i expect a lot of attention. I do feel guilty for having this...i feel guilty talking about it even because i feel it makes others uncomfortable. As for what im doing ive been working through the motions. I'm still new to the CH world as even the first couple years i didnt know what i had and had gotten to a point of begging Drs for any kind of diagnosis.

So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now. Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now