Hello, my name is Jasmine and I’m a 34 old female with HS. I was 15 when my symptoms began, and it took till I was 20 to get my HS diagnosis from a General Surgeon.
This is my story…
I am a Nurse and have been for 12 years, but HS disease has affected the field that I am employed in. Psychiatric nursing was my passion and I excelled with that population, as well as medically fragile patients. I cannot physically endure caring for them full time though due to pain from flares or areas where I’ve had surgical procedures in the past. Now I stick with office nursing jobs.
Early on in a HS flare, I’d describe the pain as dull but tolerable. As the flare up progresses, the dull pain is replaced by an unrelenting sharp one. My skin is damaged from multiple surgeries [I have had 13 wide excisions and one skin graft for HS], so I get nerve pain occasionally that burns. I also have joint pain due to my HS, but try not to take narcotics unless I have to. My PCP wanted to try Mobic for the joint pain, but I can’t take that class of medicines. By that point the pain is usually so bad it’s nauseating. This disorder can have me in tears some days.
I think that pain is the hardest thing for doctors to comprehend.
There have been a few challenges in my life living with HS. Dating post-divorce with HS is one. Intimacy was an issue as explaining that my groin is leaking pus was never easy. I have also encountered challenges with maintaining my own mental well being. It was hard some days to not get anxious over the bandages or my clothing. It’s also hard not to be depressed over the idea of my beautiful skin attacking itself and becoming pitted and scarred.
I am able to manage my HS mainly with weight loss [I’ve lost 91 lbs so far], taking spironolactone daily and trying my best to stay stress free. I maintain a ketogenic diet, which is a diet that is low carb, low sugar, higher protein and fat diet. No processed food, no refined sugars.
There are 3 stages involved with the condition, and for over a year now I’ve been in stage 3.
If I could grant a person newly diagnosed with HS a wish for their future, it would be for adequate pain control. Without HS, my life would definitely be different. I would be able to wear white clothes whenever I like. I’d also be able to save about $200 USD a month on medication and bandage expenses.