𝑼𝑷𝑫𝑨𝑻𝑬: To all the people that say I have a “bad attitude” or that I’m not trying hard enough to treat my HS or don’t want it in remission enough, here’s a list of EVERYTHING I’ve tried.

Spironolactone, birth control with the lowest amount of androgens possible, tretinoin, accutane, 3 types of oral antibiotics that made me feel like I had the flu or made me literally shit myself, hibiclens, mupirocin, fluticasone, another steroid that’s one of the strongest a doctor could prescribe you, clindamycin oral and topical, multiple types of dressings/wound care techniques, taking zinc and vitamin d supplements, cutting out dairy for months, going processed sugar free, and tried Humira that has half worked for me at the highest dose possible, and am now starting Cotenyx soon. I’ve been trying almost ALL of these at the same time on and off, including now.

And yes I’ve tried moisturizing. Yes I’ve tried going to the gym. I’ve given up caffeine, coffee and all of desserts at every family gathering.

I am at a normal BMI, never have had a cigarette in my life, have never tried ANY type of marijuana or other recreational drugs, and NEVER EVER drink alcohol.

I’ve replaced all of my underwear to boyshorts, am forgoing bras, changed my deodorant, and no longer wear lots of clothes like bikinis or tank tops like so many other people my age wear.

If you haven’t tried ALL of these things, then respectfully shut up. You have no place to talk. ————————————

TW: ED/diets/food

I am not going on this subreddit anymore, it’s making me feel so much worse about my HS and it’s beginning to ruin my mental health, which is only making the disease worse from stress.

It’s getting to the point where I feel nothing but guilt and anxiety from eating junk food and I blame myself for not trying hard enough to treat it because of seeing all these ridiculous fad diets that aren’t even proven to work.

Reminder: Hidradenitis has NO CURE. It is an autoimmune disease that is literally out of your control no matter how many solutions you try. It may get better but it will NOT go away until there’s a proven cure. It’s heartbreaking but please try to come to peace with that.

I’ve tried EVERYTHING the dermatologist suggested for me including antibiotics that make me wretch and shit myself, Accutane for 6 months, and Humira…and I’m STILL at stage 2. I’m not overweight, don’t smoke, don’t drink caffeine, have given up coffee, don’t drink soda, don’t ever drink alcohol, have skipped every dessert at thanksgiving, ban myself from getting milkshakes or donuts..and I’m STILL at stage 2.

I’m sorry if this isn’t what you want to hear because I know it’s extremely difficult to deal with this and I emphasize, but bullshit fad diets WILL. NOT. CURE. YOUR. HS!!! I feel like the people who have this attitude are bordering on orthorexia, and it’s so irresponsible. Go get some fucking professional help.

The AIP diet could work, but there is no guarantee it will do anything and you will put yourself at risk of a serious ED. That will not help it get any better, and in fact will make it WORSE due to the stress around food.

Perhaps the AIP would be very helpful for those who have legitimate food allergies/GI issues, but otherwise take it with a grain of salt.

Both my dermatologist AND my mom who’s a GP said to me that this isn’t my fault and eating a cookie isn’t going to cause flares. My dermatologist told me that the diet thing is anecdotal. They’ve had to remind me of this multiple times because I’m losing my sanity over this.

I am so fed up with the nonsense on here, and it’s beginning to feel like ED twitter.

Please be careful everyone.