Hello, my name is Stephanie and I’m a 25 year old woman with HS disease. The pain from the disease is more than just physical pain; it’s an emotional pain that often leads to complete emotional devastation. Physical pain can be managed, wounds can be dressed and antibiotics can help provide relief. What a lot of people don’t tell you is that emotionally every day is a battle.
This is my story.
When I first started to get lesions at 13, I was embarrassed and didn’t want to tell my mom or my doctor. When I searched online for answers I was led to only one diagnosis, herpes. As someone who was not sexually active it scared me, it embarrassed me, and I was afraid to tell my family doctor because I was young and very self-conscious.
Only when one of the lesions got infected at 17, did I finally go to my GP. She believed it to be a severe form of acne and treated me for the infection but not for the cause. I unfortunately ended up getting two large perianal abscesses. The ER doctors refused a CT scan insisting a lancing would suffice.
I was ignored when I tried to explain my pain, and because the abscess on the right was more painful than the one on the left it was left completely unattended. I was in so much pain I couldn’t sit or lie down; there was no way to find comfort. So when I went back to the ER for the 3rd time they finally did a CT scan and discovered how large the infections were and booked me for surgery that night.
They made two large incisions in hopes it would drain the infection but by that time, either by fault of the doctor, or by the infection itself, my rectum had been ruptured. In what felt like a blur I was wheeled back into surgery and given as ileostomy bag. I never imagined at 21 I would spend the rest of my life with an ostomy!
The Doctor who was treating me refused to put me on antibiotics to fight the remaining infection, so of course it spread throughout my body. He pushed my family and I to the point that we couldn’t take his terrible care anymore. I truly believe that doctor cared absolutely nothing about me or the quality of my life. I was in so much constant pain I wished I would die. I never contemplated suicide, but thought it would be easier for everyone [including myself] if I were to just die in my sleep one night so the suffering would end.
Instead, we decided to move to Mount Sinai in Toronto. Once there they cut out all the tissue the first Doctor let get infected, and put me on “the atom bomb of antibiotics” Meropenem. I couldn’t believe how good I felt as soon as I woke up from surgery with the infected tissue gone. You don’t think you could ever feel good after a surgery, but I felt like I could run a marathon.
While at Mount Sinai I started seeing teams upon teams of specialists and a Dermatologist made the connection to HS. It was later confirmed during a wound care appointment with Dr. Sibbald, and Dr. Alavi that it was in fact HS and they would be taking me on as a patient.
I suffer from depression because of this and I know I’m not alone. Like many of you I’ve learned to wear a mask, to smile and say everything’s okay even though we know it’s not. My highs are high and wonderful, but my lows are very low. Often I have cried myself to sleep over this disease. Personally, I find anti-depressants make me feel like a completely different person. I took them for a short time but they made me feel numb; like I was looking at a stranger in the mirror. I would rather enjoy the highs and suffer the lows than feel nothing at all.
I’m no longer employed because I was let go for being distracted and being a distraction to other workers. That’s code for you have too many health issues and you’re too friendly. I was a trained baker in a little Toronto bakery and working in the hot sweaty environment was hell for HS. I always had lesions under my arms, so I guess being let go was a blessing in disguise.
HS has 3 stages, and I’m in early stage 2 and terrified of it getting worse. To manage the condition I use a variety of items like spironolactone, Yasmine, and doxycycline, as well as a variety of different dressings. I like to use Kendall antimicrobial AMD foam; it’s absorbent and helps my wounds heal in a week or two, and Hypafix cloth tape.
I had the ileostomy in 2011, and since then I’ve been told it would be reversed and they’ll fix the scaring that destroyed my body. Now it looks as though there’s too much scar tissue that I won’t be able to have a reversal after all. For 5 years I’ve been led to believe that one day I would be free of this device and feel like myself again, but now I’ve found out its permanent and I’m devastated. Never once did the doctors warn me it could be with me the rest of my life. It was like getting punched in the stomach.
Since I’m afraid I’ll get water under the flange of my bag and it will fall off, or I’ll get some kind of infection in the open HS sores I’ve stopped swimming and going to the beach with my family. It’s something we’ve done together since I was a child and now due to other complications I have tachycardia and low haemoglobin, so it’s hard for me to even walk up a short flight of stairs.
My wish for a person newly diagnosed with HS would be that a cure is found soon, and if not a cure then an antibiotic that dramatically reduces our symptoms so we can all function like normal people.
By “normal” I mean without pain or embarrassment.
Of course my life would be different if I didn’t have HS; I would be able to run around with my niece. I would be able to enjoy the warm weather and not worry that sweating is going to cause a flare up. I would be able to work as a baker, a profession I trained for, and I never would have been in the hospital for a year. HS isn’t the end of our lives, but it can’t be denied that our lives would be infinitely easier without it