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,...
Setting: Laying on the futon in my spare bedroom, sobbing, with hot compresses under my arms.
Why the spare bedroom? Because HS has caused a huge divide between my partner and I. I'm so uncomfortable, depressed, in pain, and crabby that I can't even stand myself. I can't look in the mirror, I'm horrified, how am I supposed to get into bed with my partner like this? HS is taking its toll lately. I knew this would be tough, painful, and depressing, but I never imagined it would take this serious of a toll on my relationship. I get told I'm beautiful by my partner and it makes me cringe.
Moral of of the story- THIS SUCKS! Plain and simple. But I HAVE to get my life back on track. How do you pick yourself up after drowning in depression caused by HS?
I dont know what I'd do without this support group. Even if no one replies, I'm thankful to have the opportunity to speak my mind. Thanks in advance for the comments.
I know it's hard. I'm at an all time low. But I'm here for you. Don't give up. We're in this together.
I'm currently on a family trip right now, and instead of joining my niece and nephew in the pool I'm watching everyone have fun on the sidelines because I'm too embarrassed to show my skin. And then I know I'm the daughter in law who is not participating.
I get it, there are so many frustrating and depressing things we go through. Sometimes it's nice to vent, to read stories or to get things off our chest.
But I also want to spread infoemation and positivity so we don't get stuck in our slumps. Our slumps are void to happen, but it's up to us to bring ourselves out of them.
The thing I focus on is research, how can I minimize flareups, how can I be in less pain, how can I go into remission and wear a bathing suit and be able to play in the pool with the kids?
I can focus on my diet as I have found that to be the biggest culprit of flareups. And if I slip up and eat something that causes a flare up, don't let it get me in a slump, own my mistake, remember how I felt when my armpit started burning and leaking pus - and try my hardest not to slip up again.
No matter how our of control things seem to be sometimes, I refuse to let this control my life, I refuse to accept that I'm not in control. I truly believe eventually we will figure this out and overcome all of this.
Thank you for your post. I agree, sometimes it's just nice to know there are others out there :)
And I can 100% relate to you when it comes to family outings/events. Everyone looks at me like I'm just being a jerk and not wanting to participate. It's as if I can hear them saying "She's such a downer." I'm always looked at as the girl who sits out and watches. Not because I want to! But because sometimes just the simple act of moving, hurts.
Thanks for replying, I think I'm going to join you and start some of my own research. There has to be SOMETHING we can do for ourselves when we feel at an all time low. Just doesn't feel like it at the time.
Thank you for your positivity, I needed it. Take care (: