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tiffannybrown

Surprised at lack of support

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tiffannybrown

I feel like I have really good friends. I only choose a few to confide in. One was really great but the other 2, sort of seemed like they only wanted to talk about it briefly, like they only had a time limit for how much I could vent about it. 

 

My mom is my best friend and yesterday she told me she thought I was being dramatic about it....which just sort of just left me speechless. I was diagnosed just 10 days ago, and while I do recognize that type 1 is more an inconvenience than anything, I still have no idea how it will manifest in my body, and I still have to move forward knowing that I will have to tell my future partners I have genital herpes. 

 

I just sort of feel like people feel like it’s just nbd, and I guess it is.... if you don’t have it. 

 

 

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Lulupazoola

I have a daughter with fibromyalgia.  I never really understood what she goes thru until i broke with a chronic incurable disease myself.  She is pretty stoic, doesnt talk about it too much, meanwhile having bouts of horrible pain, depression, rage, disruption to her life.  I remind myself often that what i go thru is nothing compared to her problems.  But before I broke with this virus and struggled in its grip, I just didnt get it.  I was concerned, of course, but didnt really know like I know now.  So, I think thats what its like talking to someone about your H, even someone close to u.  If theyve always been in good health, or at least manage to get over what health problems they've had, they just probably cant relate.  Thats what forums are for....  so grateful for them.

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Miss Horne

Unfortunately there is a lack of support for herpes sufferers in general I find. 

It’s been said a million times before, things could always be worse but I say things could always be better as well! 

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blurneworder
11 hours ago, Miss Horne said:

Unfortunately there is a lack of support for herpes sufferers in general I find. 

It’s been said a million times before, things could always be worse but I say things could always be better as well! 

I’m not diagnosed, but I’m suffering from herpes-like symptoms. 

Its affected me entrie life. The daily pain and opportunities it’s taking away from me is sad.

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cowpoke02

hard to realize how bad things really are .. i can be dying and people around me don't have a clue .. you have to save ou r self in life ..   what would you do for me if i could suppress it most the time and  or cure  it ? lol . business deal .  how much is i worth to  you  ? evil laugh . 

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JTHoney

I was diagnosed last week too, and it is hard! I have been lucky enough to have supportive people, but that's because I've only told the people I figured would be supportive. And at the same time, it feels wrong to keep it a secret just because of this. The pain is horrible when it comes, but aside from the pain of outbreaks, it's like catching a cold down there when it comes down to it, so why does there have to be this weird social stigma? 

It definitely helps to find this forum and talk! 

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Lulupazoola

There is such a wide variety of symptoms that can be quite serious, and nobody outside the forum seems to know that.  Until i began reading H forums, i thought my symptoms were so atypical and serious, just basically being broken out constantly, with a day of depression and a day of fatigue per lesion, etc.  My GP said i was her worst case, altho she must not have too many. When, i started reading on this forum, I realized many of the people here have unusual and serious symptoms.  I am not the worst case here and feel some gratitude knowing that it could be worse.  Very few write in and describe their symptoms as infrequent and not bothersome. So the greater population out there doesnt have a clue what we go through, as they think herpes symptoms are basically infrequent and not bothersome--that that is the norm.  Its hard to get thru to people that u are really sick and not just a whiner--better not to say anything unless its to someone who you know supports you.  Anyway, this is definitely the place to find others who suffer similarly and understand.

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Atrapasueños

Te entiendo completamente, los pocos familiares que saben de mi H me dicen que exageró ellos no entienden y muchos de este foro te juzgan pero no saben que es vivir con ardor y comezón diariamente envidio a la gente que no tiene síntomas

_____________________,

I understand you completely, the few relatives that know about my H tell me that they exaggerated they do not understand and many of this forum judge you but they do not know what it is to live with burning and itching daily I envy people who have no symptoms

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