Patient Stories
Patients with HS suffer from pain, fatigue and the discomfort from drainage and struggle with unpredictable flares.
…constant pain and drainage. Always planning around my HS.
…challenges getting out of bed with muscle aches and fatigue… even driving hurts from flares in the lower are…
HS is exhausting. Constant ups and downs
Just when you think you have mastered your HS – it pops up in a different area…
A negative self-image results from the lesions, and from lack of knowledge, misconceptions, and negative reactions from others – even from some health care professionals.
I struggle to see the beauty in myself every day.
I’ve faced discrimination in doctor’s office… I felt like the surgeon was pushing me off trying his hardest to get me out of his office…
…she thought I was contagious and told me to get out.
Another common misconception about HS is that only people who are overweight can have it.
All aspects of life are impacted. Education, work life, family, relationships, marriage, parenting – planning around having HS and adjusting to it is demanding and reduces possibilities in life.
…having to do everything differently from working jobs to interacting with friends and family, the way I have to clean wounds, what I eat…
…many days I have to cancel plans with friends or family members because the HS flares are too painful, and the fatigue has gotten the best of me.
Sexually, HS has impacted that part of my life. Even my marriage. The physical limitations as a parent seem to be the hardest for me currently.
At my previous employer, I was asked if I actually work, because I was having so many flare-ups. I’ve been on disability for a few years now.
Access to care and treatment is a challenge, and many patients don’t get any treatment.
Can’t afford it
Insurance not accepting certain treatments and having to pay out of pocket for wound supplies.
No health insurance, expensive co pays. Never seen a specialist.
Coping strategies often include distracting our minds, adjusting our diet, and eating healthy, reducing stress and activity levels. Support through the HS patients’ community is important and makes us feel less alone.
Writing music helps me cope with the anxiety and depression.
I like to play videos to distract my mind from the pain of the HS flares.
I am overwhelmed with love in the community I have.
Find an online community of fellow HS warriors for emotional support. They will understand what you’re truly going through with HS.
