Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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What should I do?

deleted_user
deleted_user
Hi, my name is Claire.

I'm 19 years old and recently discovered this website. For years I have had the symptoms of Hidradenitis Suppurativa, but no idea why or what it was. I am overweight and was always told that it was from that.

I have always been an extremely outgoing person. The only thing I have ever been scared about is someone seeing my scars, the ugliness, the secret about myself that I hate. Whenever I've had boyfriends I've always told them the reason I was self conscious was because of being a big girl, but it's not; it's these scars! I am an extremely sexual person and it is so hard for me to be myself when I'm so ashamed of being naked...

A few months ago I ended a relationship with someone who I had been with for 2 years. Recently I have met someone online who I really enjoy talking to. We want to see each other but because of personal problems won't be able to for some time.. I am very attracted to him as he is to me and we established that for the time being webcam would be the best way for us to eh.. "be intimate"? Lol..

I've been hiding myself from him as much as I can.. Not allowing myself to do what I would love to do for him.. Being in a certain position so he can't see certain areas of me.. Not showing him everything.. I feel like I'm lying.

So what do I do? Should I just show him and hope he says nothing? Should I tell him about it? In past experiences I was in the dark with the person, or they saw but didn't say anything, or were not in a relationship with me so it just didn't matter, I never saw them again.. I really like this guy and want to be able to open up all of myself to him but am scared of rejection.. I mean, this disease is so ugly.. I want someone to be able to love me and see my body and me as me and look past everything else, but I don't know if that will happen. Blah, I'm just so scared to know what he'll say or what expression will be on his face when he sees.

Any advice?
respectful
respectful
I think you should tell him about it, and then show him. Tell him you are very self conscious about it all, and that you don't want him to change his perspective of you, just because of it. I developed HS 5 years into my marriage, and we have been married for 14 years last June. My husband is the one who dresses my wounds in the morning, and feels bad for the pain I am in each day. He if truly understands, he will be supportive of you and won't reject you. You will know that he is the right person for you. He should express concern for you as a whole person. I wish you luck. Please tell him.
deleted_user
deleted_user
Ditto, with Respectful"s advice, The truth, sounds like a winner!!!!!!
deleted_user
deleted_user
I agree that honesty is the best policy. If he is worth having and he likes you for you, then he will understand. I have had to tell boyfriends before and they didnt seem to care too much. I think they are blinded when in that aroused state. ;o)
When I talk to them about it, I am as emotionally open as I can be and they respond well.
My current husband helps with my dressings and is sympathetic of our plight. But he loves me for who I am on the inside and he tells me he doesnt care about that.
Many people in the world suffer from something that they have no control over. Some can't even hide it like some of us can. If someone rejects you for something you have no control over, they don't truly love you and are not good enough for you anyway.
Take care, my thoughts are with you.
deleted_user
deleted_user
The one other thing to keep in mind is that you are beautiful regardless of the scars. And clearly he cares about you and loves to see you so if you express yourself and let him know how you feel about it he will probably surprise you!!!! Also something to keep in mind is that this is not something you are doing to yourself. If we could control and are choosing not to then thats different. No matter what hold your head up high and if he can't accept you there are defintiely wonderful people out there who will. I know it is scary but if you stay strong and have faith in people sometimes it is worth the risk. Good Luck and we are here for you anytime you need someone!
deleted_user
deleted_user
When I first my my (almost... ina few days :) ) husband, he was scared to tell me anything. I remember, we were riding in his car and he told me he had a skin condition.... he didn't know what it "was" but described it to me... I honestly didn't care, b/c I saw the beautiful person sitting next to me...I didn't care that he had the scars he told me about, I thought he was sexy b/c of who he was..... and still is. He didn't know what it was and his mother only knew that it was genetic....After 3 years of us being together and married (on the 22nd of Nov!), I finally (just recently) figured out what it is. I've been trying and searching to find an answer... and didn't... untill recently............................. But the fact remains that he DID tell me that there was SOMETHING going on........ he was honest from the start............ and I cared enough about him to not care about his scars (little, but, yea, they are there..... explained in my profile)................ In other words, if he cares about you AT ALL he wont care about your contition.........
deleted_user
deleted_user
Thank you everyone for your advice.

I've decided that as time progresses I will eventually tell him about it. All of you mentioned that your husbands are the ones that accepted this condition or wife, and me and him are not at that point yet. Lol. I want to feel as comfortable as possible with him before I expose my deepest darkest secret.