I would like people to know that this is a debilitating disease. Just because it's labeled as a skin disease some people don't take it seriously. Another thing is that many people believe if you can't see a person's disease it can't be that bad. 😕

I would add that HS can cause scarring. Sometimes major scarring. Starting a conversation about HS with someone, whether they're friends of yours or someone new you've started dating, is a hard maneuver to make. I do think more attention and
knowledge about the disease and what it is would help us.

Weight loss 🤨 when I was a size 10 and suffering with this I received nonsense that it could be an STI… after lockdown I went up to a size 18 had less flares than when I was skinny and suddenly all healthcare practitioners could tell me is that its because I need to lose weight… pure ignorance and neglect to thoroughly investigate anything

It's difficult for people to understand how mentally and physically painful and exhausting this can be, for them to know that when you can't do something because you have a flare, it isn't just a boil and that while this one abcess prevents you from doing/attending something, you have another 20 happening at the same time, you have already been fighting/coping to live a normal life for months, hiding your pain, but this one has just been the one that broke you this time.

It’s not any such of a thing. Living with HS is day by day. You will have some good days and some bad days. God blessed me with with an equal amount of both I would say. More importantly, he was with me in the darkness of the bad days and through the pain of surgeries and all the recovery. He was there. As I have aged, my break outs have been less until recently when my mom became sick with her 2nd brain tumor and consequently died. The stress from that situation lead to the worst breakout I have ever had. So, managing your stress would be the number one take away from my life lessons so far that also would include for me weight management because when I am stressed I tend to over eat. I am currently on a diet and have lost 24 lbs: heat- it’s a killer for me too just as others have said.
There is no magic answer that fits for everyone, but there are something’s I think that I see that seem to be common factor for most of us. HS is for life: it is an auto-inflammatory disease: it affects people of all color, races and genders, it is not a pimple, it is not a cyst, yes it tunnels or forms sinuses under the skin; it is not contagious to other people; it can and very likely may spread to other areas of your body: using hibiclens or such types of washes for your specific area may help. Theses are just a few of my thoughts . Hope you have a good day!