I Was Open To My Job About My Hidradenitis and It's One Of The Best Things I've Done
Last updated: July 2022
I don’t know about you, but sometimes I get nervous to tell people about my hidradenitis suppurativa. Don’t get me wrong, I absolutely love talking about HS to try and raise awareness, but sometimes I get nervous that people will think I’m looking for sympathy or attention, or that they might get grossed out about it.
Telling my employer about my HS
One place I get pretty nervous to talk about my HS is at a new job. I initially get worried that my employer will think I’m using excuses to get out of work or take days off, but honestly in my personal experience, that has never been the case. Since finding out that I have HS and needing to get surgeries for it, I’ve worked at 6 different places and I’ve never once been treated like I was lying or trying to get out of work. I personally think letting your employer know about your chronic illness is one of the best and most important things. Especially if you have an illness like HS that might limit your mobility and ability to work to your fullest potential.
It usually takes some time for me to come out about my HS to a new employer. I might casually mention that I have an autoimmune disease, but I really don’t go into detail until I start flaring to the point where I need to call out sick to work. Truthfully, your medical diagnosis is personal information that an employer doesn’t need to know full details about, but I really don’t mind going into the details because it helps me in the long-run. Not only do I get to raise awareness for HS, but all 6/6 times, it’s helped my employer understand why I might not be 100% some days and why I might need certain accommodations. Since my HS diagnosis, all 6 of my employers that I’ve had have been super understanding and honestly just wanted me to feel better when I’m flaring.
My job has been a dream come true
My job now is a dream come true. I started at this job in February and my HS has been pretty good (up until recently) and I haven’t had any flares that made me have to call out sick to work. So like I mentioned above, I really only brought up in passing that I have an autoimmune disease.
Unfortunately, that’s changed and my groin has been acting up badly. With my job now, I’m still on the 6 month probationary period so I haven’t earned my fully paid sick-time and personal time yet. My flare was too much to walk on, but I didn’t have any paid sick-time to use. So I called in sick anyway and was fully open about what I was dealing with. My job was super understanding and said I would just owe a sick day once I earned them. But the understanding didn’t just stop there.
I don’t know how I got so lucky, but once 2 of my coworkers got wind of my HS, they decided to donate some of their remaining sick days to me! So now I have some banked in case I have a bad flare and need to call out. I seriously don’t know how I got so lucky to work with these great people.
It can be scary to open up about HS
My supervisor also will try to help with my dietary restrictions and if there’s a special celebration where cake and cookies are brought in, she’ll bring me fresh and delicious fruit so I’m not left out as everyone is eating around me.
This past week has been really rough flare-wise and I had to go to the doctor to get lanced in the right side of my groin. My job let me leave work early to go to the doctor and completely understood when I had to call in sick the next day. I tried to go back to work for the first time yesterday and before I even got inside of the place, my supervisor came out to check on me when I was still in the car. She took one look at me, asked if I'd like to use a sick day, hugged me, asked me if I was okay to drive, and then sent me back home to rest.
I really don’t know how I got so lucky with this job and my amazing boss, supervisor, and coworkers. It’s really scary being open about your HS, but it really can help make a positive difference. Don’t be scared to be open about something that’s completely out of your control.
Do you have trouble paying for your healthcare costs?