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How has hidradenitis suppurativa affected your closest relationships?

myHSteam asked a question 💭
San Francisco, CA
March 25
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Answer Summary

Members opened up about how hidradenitis suppurativa has deeply affected their closest relationships, with many describing lost confidence,... Read more

Members opened up about how hidradenitis suppurativa has deeply affected their closest relationships, with many describing lost confidence, reduced intimacy, and a painful sense of shame or isolation. Several members shared that open communication with supportive partners helped, while others have chosen to step back from dating entirely to avoid the emotional burden of explaining their condition. A recurring theme was the grief of feeling disconnected from loved ones and one's own body, balanced with encouraging reminders to seek community support, explore treatments like Humira or natural remedies, and give yourself grace.

A myHSteam Member

I have not been in an intimate relationship in over 10 years. I don’t even want to have the conversation with a new person. My HS has popped up in new areas like on and under my breast, upper butt area near butt crack sorry if TMI and now that I am in my early 50s and it’s pretty much a deterrent for me. What little confidence I had is pretty much gone now.
As for friendships my girlfriends do not understand me not wanting to go places like I used to, so yeah.

March 25
A myHSteam Member

If you can, go look up the many long, descriptive explanations about how I handled my breakouts.
I got it stopped early (when I had just two pustules with one tunnel between them), by using the products I detail in my many replies to everyone.
I use/used no Antibiotics, no Rx prescriptions. First, let me say, to test ANY new product to see if you're allergic; dab a drop on your clean inner arm (between wrist & elbow), cover with a bandaid; leave it there if you can, overnight. If no reaction, you can use it with no problem. Of course if it gets itchy, swollen or red, remove the bandaid, clean the skin and cross that one off the list. Advice I got from, YES, a Dermatologist, years ago when they once were happy to share easy hints.
It's just a matter of showering by washing crevices with my Jāsön TeaTree body wash ((made stronger by adding TeaTree essential oil), leaving the suds to soak in while I washed my hair & everywhere else)) then gently dabbing on my Sky Organics Tea Tree Witch Hazel facial toner (yes, gentle, I use it on my oily face too) in my crevices once or twice a day & allowing to dry (I stand in front of a 6" fan on the bathroom countertop, moving in front of it until all my crevices are DRY). In my more difficult stages, a very thin spot-catching menstrual pad stuck INSIDE MY CLOTHING facing my skin in early days before I got it under control, was very helpful.
My hubby and I are SO glad I got it under control- no breakouts currently, and none for a couple of years; my skin is again normal-color (instead of an ugly purple-red lesion, leaking smelly green pus).
I hope this helps some people who find their Rx's too expensive, have bad reactions to meds, or other treatments are too cumbersome. 💔 ❣️ ❤️‍🩹
With much care, Tary

March 25
A myHSteam Member

After my diagnosis two years ago, I’ve mostly kept to myself. Today I actually looked at all the scars nd it broke my heart. It’s the hardest thing to deal with when you’re battling with your self esteem. I never pictured id be 52 and alone. This really sucks.

March 25
A myHSteam Member

My best girlfriend doesn't understand how uncomfortable & painful it is. Sometimes I feel she thinks it's all in my mind. Oh how I wish.

March 25
A myHSteam Member

I feel embarrassed and I am very conscious about smells and any leaking, not a good feeling! So I’m choosing to be alone most times.

March 25

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