Absolutely it's isolating I can't imagine getting it at such a young age however during the prime of my life now in my mid-30s I can't seem to meet anybody and of course hiding and being Incognito is always on the front of my day. I enjoy posting and responding so far because it does make me feel that there are other people that suffer from this. I think the biggest problem for me is that it is affected my neck and eyebrow and nose and that is something you really can't hide unless it's 20 degrees outside and you can wear a scarf and a hat on your face. I also am in the process of filing for disability question for you did you get a disability lawyer or do you think that you're going to get it on the first try because I hear that a lot of people get shut down the first time they file good luck and feel free to friend me and respond

I also have been living with this for 20 yrs now. This is worse as it's been. I had surgery in 2012 and was in hospital for 3 months but still haven't healed completely 5 years later.it's Been hard as hell to work with all the pain and constant worries of drainage since I work retail I'm on my feet most of the day which makes everything hurt even worse. I took humera and it got my hopes all up just to crush them 2 months later with more breakouts and severe pain. Can't sleep much. I did see a pain management doctor and have some meds I take when needed. Mainly to sleep. I applied for disability in july with lawyers that were provided by my job. I'm still waiting on decision. All I can say is hang in there and try some of the things others suggest. Seems everyone is different when it comes to treatments so it's all about trial and error. Also talking to a psycologist will help too. Stay strong and positive!

Hello Sadmissy+Bmorefrank! *hug* I appreclate your responses. I understand a little bit of what you mean with your face sweetheart. It's horrible. I don't have HS on my face but I've had cystic acne for a long time. The older I get the better it gets on my face but I still have horrible, deep scars. I hate it! Im so sorry you have to deal with that. It took me a long time to be able to learn how to keep the swelling down during the day and keep my skin hydrated enough to make it all look half decent with makeup. If you are into make up I would love to give you some tips! I went through a disability lawyer. It was no charge up front, they just take the fees out of the back pay if/when I win. I figured it was better because I'm so young and it's gonna get hard to get approved.. one of the best tips I can for filing with HS is when they send my out your packets with all the questions about everyday life, etc. Send back some pictures of your scars/lesions/cysts and it should help a lot. That's what my doctor recommended. A lot of people just aren't familiar with it. If they can physically see the hell it's putting your body through it may help them decide faster! Also keep up with doctors appointments thats a HUGE thing to get approved. I honestly hate going to the doctors with HS just because all they do is give me antibiotics or some medicine that doesnt work and charge me a bunch of money... but it all looks good on paper I guess. And when they contact my doctor she can 100% tell them that I deserve disability.


As for you, Bmorefrank I relate with a lot of what your saying! I get very very little sleep because of pain. Every miniscule movement is agony most days for me.. :( I've been in with a psychiatrist since around 13. It helps some but Its still hard. My doctor wants to put me on Humira at the ends of this month but I'm nervous about it because I've heard such mixed reviews...


You both stay positive, and strong. Thank you for your kind words.

Yes I can imagine exactly what your going through as I also have stage 3 HS and you cannot explain the pain it causes and unable to move and sleep properly even getting out of bed can be a task and then change img the dressing regularly

Yes!!!

My confidence has pretty much gone into negatives. I'm just trying to become as numb as possible now, trying to not even care about social/sexual relationships. I don't know how else to deal with it. I'm relatively symptom-free on most days (it used to be a lot worse about 2 years ago), but even then I still carry the scars, both mentally and physically.
I really want to see a psychologist, but without a job I don't think I have enough income to afford one.

I know all of this is so hard.

I was called crazy so many times one time last year actually I drove straight from the dermatologist and to the hospital..I said ok there is nothing they can do or give me that's going to work sign me up for intensive outpatient therapy took an FML from work and I did this because I was going to kill myself over it I graduated from this class 2 times and spent lots of time talking to Drs that basically thought I was full of shit they didn't help me and I fact after 8 years with Howard regional hospital the psych part I am now banned from going there . I had a crap Dr and let's just say I refused to be made into a zombie and basically demanded to see this doctor s credentials..I made a big seen ..and I can not and would not go back there I will say they distracted me from my pain and they gave me some advice on how to focus on what's important to get through walking around with Band-Aids all over my face fobia

And a $4000 bill

Hey, I'm trying to get the word out about what I just discovered! Drinking a TON of Cranberry juice every single day stopped the reoccurring cycle of my HS. I am no longer in pain and I feel great. I don't know if this will work for you and I'm not saying this is not a cure but it wouldn't hurt to give it a try.

P.S When I stopped drinking the Cranberry Juice, the HS started back up again so I started drinking it again and it stopped

I really hope this helps :)