Color me red...
It is a terrible thing having this disease. All the times you are in such pain that you are walking funny and trying to hard NOT to walk funny...trying so hard NOT to draw attention to yourself lest you have to try to explain your disease and watch someone's face change. It doesn't matter what it changes to, really. Sympathy or disgust...either one feels like just another knife in my chest. Another thing that makes me NOT like everyone else after a lifetime of just wishing I could be normal.
I had weight loss surgery nearly a year ago. One thing I had hoped was that the HS would get better and instead it has gotten worse. Perhaps it is like my gyno says...that the stress of the weight loss has caused a momentary flare up, but with continued weight loss the HS might go into remission. I wish I could believe that...but right now I feel so desolate.
I seem to grow things in general. Ten years ago I had a huge fibroid removed from my uterus that was the size of a volleyball. Three days ago I had 2 liters of fluid removed from a cyst on my ovary and the huge empty sac removed. Four days ago, the last day I worked before that surgery, I had one of my "boil-y things" (which is what I called them) high up on my right thigh near my buttock. It was huge and swollen and angry and weeping blood for days to the point that no matter what I did, I always ended up with some on my clothes. But Thursday it got so bad it soaked through the bandages and literally looked like I had my period there was so much blood....all over my shorts and to my horror, ON MY OFFICE CHAIR.
Well, of course, I left even earlier than planned with nothing more than a quick email to my boss (a woman). Yet I didn't explain the real reason...I just let her think it was part of my cyst issue, because that had been making me bleed abnormally like a really bad period. I had promised to call her on Friday after my surgery and I did...but I got her voicemail. I was secretly relieved. I didn't want to have to try to explain, and I am not sure how much explanation she expects or how much to offer. I just know that I go back to work day after tomorrow and that I am still so ashamed I don't know how I will walk in there.
HS is a rotten, horrible disease. I feel like a freak. Like a disgusting sideshow. And I never wanted to get labeled with it even though I knew before my gyno told me I had it because I feel like it is proof that I will never find someone to love me.
I'm 38 years old. I have had one boyfriend in my life, way back right after high school. And I still remember him asking what one of my HS lesions was. DOWN THERE, when we were getting intimate. HS just ruins everything.
Most days I am ok being alone. But lately it seems like EVERYONE is involved with someone and all of the women around me are having babies. And I know it is too late for me. I wouldn't want to have a baby at almost 40 even if I could. I feel so cheated by life. By love. By God. But it doesn't pay to ask why, because there are no answers except WHY NOT? Why would you expect life to be fair or kind? When has life ever shown you either one?
Sigh. I miss the old me from my 20s. The one who had hope for a future brighter than the reality she lived in. Maybe brighter days are coming, but right now I can't see it.
I had weight loss surgery nearly a year ago. One thing I had hoped was that the HS would get better and instead it has gotten worse. Perhaps it is like my gyno says...that the stress of the weight loss has caused a momentary flare up, but with continued weight loss the HS might go into remission. I wish I could believe that...but right now I feel so desolate.
I seem to grow things in general. Ten years ago I had a huge fibroid removed from my uterus that was the size of a volleyball. Three days ago I had 2 liters of fluid removed from a cyst on my ovary and the huge empty sac removed. Four days ago, the last day I worked before that surgery, I had one of my "boil-y things" (which is what I called them) high up on my right thigh near my buttock. It was huge and swollen and angry and weeping blood for days to the point that no matter what I did, I always ended up with some on my clothes. But Thursday it got so bad it soaked through the bandages and literally looked like I had my period there was so much blood....all over my shorts and to my horror, ON MY OFFICE CHAIR.
Well, of course, I left even earlier than planned with nothing more than a quick email to my boss (a woman). Yet I didn't explain the real reason...I just let her think it was part of my cyst issue, because that had been making me bleed abnormally like a really bad period. I had promised to call her on Friday after my surgery and I did...but I got her voicemail. I was secretly relieved. I didn't want to have to try to explain, and I am not sure how much explanation she expects or how much to offer. I just know that I go back to work day after tomorrow and that I am still so ashamed I don't know how I will walk in there.
HS is a rotten, horrible disease. I feel like a freak. Like a disgusting sideshow. And I never wanted to get labeled with it even though I knew before my gyno told me I had it because I feel like it is proof that I will never find someone to love me.
I'm 38 years old. I have had one boyfriend in my life, way back right after high school. And I still remember him asking what one of my HS lesions was. DOWN THERE, when we were getting intimate. HS just ruins everything.
Most days I am ok being alone. But lately it seems like EVERYONE is involved with someone and all of the women around me are having babies. And I know it is too late for me. I wouldn't want to have a baby at almost 40 even if I could. I feel so cheated by life. By love. By God. But it doesn't pay to ask why, because there are no answers except WHY NOT? Why would you expect life to be fair or kind? When has life ever shown you either one?
Sigh. I miss the old me from my 20s. The one who had hope for a future brighter than the reality she lived in. Maybe brighter days are coming, but right now I can't see it.
Replies
There is nothing you stated here that is different than what I feel most days of the week at least once a day. HS is a sucky disaese and the first time I ever felt somewhat okay with having HS was a couple days ago when I found support groups like this to help me feel not so alone in the world.