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cdoasis

how people perceive me and the way I act

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If any of you take the time to read this and give me your honest response... I thank you very much.

So... I've recently become very self-conscious. I'll make this as short as I can. About a month ago, I started coming down with conglobata (for the second time in my life, had it 3 years ago as well). If anyone else has had this, maybe you can understand better.

I don't want to gross anyone out, but this is what I'm going through. I have about 30+ cysts covering my chest and back, and they're constantly rupturing and bleeding and whatnot, forming huge, painful scabs which take months to go away. I always have to wear a rag shirt under my normal shirt, I'm always in pain, I'm always on vicodin as much as possible, it's affecting my work to the point where I can't work all the positions I used to, I can't perform at work as well as I used to, and I've been working less hours and thus making less money, it's extreeemely affecting my daily life because I have to re-plan events (especially showers), not only do I have less money from working less but I've spent alot of money on doctor's visits etc (I have no insurance, yet), at this point you can tell I'm very stressed out and don't sleep enough either... it also affects my posture, the way I walk, and seems to tense up my shoulders...

And yet the only people who I can really talk to about this are my parents, but I live on my own so I talk to them online... and when I'm not doing that I'm sitting by myself in my room because I'm generally to afraid to go out and do anything, or be social, or do anything that I would NORMALLY do... so I'm in my room/house for hours on end...

Yet I don't think I complain about this too often... alot of people ask what's wrong (it's kind of obvious from the way I act and walk, at least that I'm in pain) and I'll be open and tell them what's wrong, without going into detail, but I don't really complain about it..

So.. I guess I want to know if I'm overreacting about it, since one of my close friends said that I talk about it too much... but it's because she's the only one who would listen, or wanted to know in the first place, besides my parents. As for what I'm going through, is it really that tough? Or am I overreacting or creating drama? I feel as though it's literally ruining my life.. temporarily.... yet I don't think I hardly talk about it...

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I would suggest that you find an online support group of other people with your condition...

I am sure you are not alone and it not healthy for you to be sitting up by yourself.. maybe it turns out there is someone in your area that you could meet with in person.. as soon as your insurance kicks in i urge you to find a counselor to discuss your feelings of alienation..

take care , Key :)

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Guest The Effendi

I don't know what that is, but it sounds really rough, and I don't think you're

overreacting. Sounds like your friend doesn't quite get it either :( Just

hang in there for your insurance............if only it wasn't so hard to get help.

You'll make it :comfort:.

What exactly do you do, for work?

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I don't think you are overreacting. People here get one cyst on their face & they freak out.

If you are in pain & this condition is affecting your everyday life then it is no wonder it is on your mind a lot.

I can understand your friend's position too, cuz I have a sickly friend who does nothing but talk about her health problems & I feel like it's always about her. You may not even be doing that, but keep aware to not make every conversation turn into a discussion on your skin problem. Your friend offered to be there for you, so just try & do the same for her. But I do not think you are overreacting & you should be able to talk to close friends about things that are bothering you.

I find this forum very helpful when my skin gets me down. My family will listen to me, but I don't want to be complaining to them constantly & they don't really get it either since they've never had acne like me. So I've vented here when I needed to & people are usually very supportive.

I hope you find some successful treatment & it gets better too :comfort:

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What you are going through sounds awful! :comfort: And this is definitely the place to come for support. I think people may have been confused by the name of the condition, but it is actually a form of severe cystic acne. I don't think you are over reacting at all. It is very difficult to be in constant pain, and it is probably hard to not think about it. I read about conglobata on emedicine, and as far as treatment goes, it says that "Along with vigorous medical therapy, emotional support is essential." So please keep posting as long as you need to. Are you currently taking any medication for it (besides pain medication)?

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I don't think you're overreacting at all. Who else are you going to talk about it with if you can't talk to your friends about it? It effects your life, job, quality of living, it's a big deal, talk about it. I like your attitude though, it doesn't sound like you try to run away from the problem, you fully accept it and are living with it rather than disowning yourself. It sounds like a horrible condition, I did some reading on it before, and saw some pictures, my heart goes out to you.

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If any of you take the time to read this and give me your honest response... I thank you very much.

So... I've recently become very self-conscious. I'll make this as short as I can. About a month ago, I started coming down with conglobata (for the second time in my life, had it 3 years ago as well). If anyone else has had this, maybe you can understand better.

I don't want to gross anyone out, but this is what I'm going through. I have about 30+ cysts covering my chest and back, and they're constantly rupturing and bleeding and whatnot, forming huge, painful scabs which take months to go away. I always have to wear a rag shirt under my normal shirt, I'm always in pain, I'm always on vicodin as much as possible, it's affecting my work to the point where I can't work all the positions I used to, I can't perform at work as well as I used to, and I've been working less hours and thus making less money, it's extreeemely affecting my daily life because I have to re-plan events (especially showers), not only do I have less money from working less but I've spent alot of money on doctor's visits etc (I have no insurance, yet), at this point you can tell I'm very stressed out and don't sleep enough either... it also affects my posture, the way I walk, and seems to tense up my shoulders...

And yet the only people who I can really talk to about this are my parents, but I live on my own so I talk to them online... and when I'm not doing that I'm sitting by myself in my room because I'm generally to afraid to go out and do anything, or be social, or do anything that I would NORMALLY do... so I'm in my room/house for hours on end...

Yet I don't think I complain about this too often... alot of people ask what's wrong (it's kind of obvious from the way I act and walk, at least that I'm in pain) and I'll be open and tell them what's wrong, without going into detail, but I don't really complain about it..

So.. I guess I want to know if I'm overreacting about it, since one of my close friends said that I talk about it too much... but it's because she's the only one who would listen, or wanted to know in the first place, besides my parents. As for what I'm going through, is it really that tough? Or am I overreacting or creating drama? I feel as though it's literally ruining my life.. temporarily.... yet I don't think I hardly talk about it...

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What you are going through sounds awful! :comfort: And this is definitely the place to come for support. I think people may have been confused by the name of the condition, but it is actually a form of severe cystic acne. I don't think you are over reacting at all. It is very difficult to be in constant pain, and it is probably hard to not think about it. I read about conglobata on emedicine, and as far as treatment goes, it says that "Along with vigorous medical therapy, emotional support is essential." So please keep posting as long as you need to. Are you currently taking any medication for it (besides pain medication)?

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sometimes we just need to vent our emotions, and i hope ppl on here, me included can help u with that, if u need support, im here to talk, i dont understand the degree of ur condition but i understand it can be very stressful and it may be depressing, so netime u need to talk send me a msg :)

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Just in case it applies -- you wouldn't happen to live in California, would you? If you are, state law (AB 2222) may give some protection in terms of requiring an employer to make "reasonable accomodations" to make it possible for an employee with a disability to perform their job.

If you're not in CA, disregard this. (Or check the laws where you live -- maybe there's something similar.)

Best wishes to you for getting through this. It sounds like an incredibly difficult condition to live with.

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Just in case it applies -- you wouldn't happen to live in California, would you? If you are, state law (AB 2222) may give some protection in terms of requiring an employer to make "reasonable accomodations" to make it possible for an employee with a disability to perform their job.

If you're not in CA, disregard this. (Or check the laws where you live -- maybe there's something similar.)

Best wishes to you for getting through this. It sounds like an incredibly difficult condition to live with.

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