Category Archives: anxiety

LilliRose’s Story: Living with Hidradenitis Supporativa

I arrived early at the Schaumburg Starbucks. I didn’t want to be late.  I had corresponded with LilliRose for several weeks and had sent her my photo a few days earlier.  I told her that I would be wearing a red ball cap for identification. I didn’t know what to expect, as she was my first interview

After a short time, I heard my name being called from behind me.  “Mike Kuna?” I turned to see a beautiful 24-year-old with a bright smile.  It was LilliRose, here is her story.

LilliRose grew up in Schaumburg, the oldest of two children.  Early in her life she started to take dance and had a natural talent for it.  She is creative and excelled not only at dance but also at acting. Although dedicated and intelligent, LilliRose had difficulties in school with reading and math.  It was later determined that she had both dyslexia and dysgraphia. Her mother stepped in, helped her, and eventually, her reading ability improved. However, math continues to be a struggle for her.

LilliRose was active in school theatrics and was also involved with a musical theater production company during elementary and high school.  Her acting skills caught the attention of a manager who told her, “You can act,” and for several years she tried out for a variety of parts that ranged from local TV commercials to LA productions.  In school, she was active in Poms and maintained a “B” average despite her learning issues. On the surface, it would appear that she was leading a charmed life.

When LilliRose was ten, she discovered a lump on her inner thigh close to her groin.  She is a private person and kept the bump to herself. Months later that her mother discovered it when she saw LilliRose in a bathing suit.  Concerned, her mom took her to a dermatologist who told her that he didn’t know what the bump was. Other doctors and other treatments followed.  The bump sometimes got bigger, sometimes smaller. None of the treatments helped.

It took about a year before a new doctor finally came up with the correct diagnosis, Hidradenitis Suppurativa (HS) a rare skin condition where the patient develops painful cysts, papules, and nodules in the groin, breasts, and armpits.  Cysts can ooze malodorous pus. The disease is chronic, its cause unknown, treatment is limited, and there is no cure.

LilliRose tried to ignore her illness and to live her life as a typical teen.  She went to school, dated, and was active in extracurricular activity. “I didn’t think about HS very much.”  She held onto the false idea that one doctor told her, “You will outgrow this illness.”

She entered Columbia College as a dance major.  However, after a year of schooling, she realized that she did not have the all-consuming passion necessary for a dance career.  She is now on a hiatus from school and supports herself as a server.

Two years ago the bottom dropped out for LilliRose.  Her lesions spread to her underarms, and this was devastating. “Before they were hidden, now everyone could see them.”  She also became aware that her HS would not fade away with age. It was sobering for her to realize that she could be dealing with HS for the rest of her life.  LillieRose fell into a deep depression.

“I ignored my HS before, but two years ago I faced it. I didn’t understand how I could deal with the sores and pain when I was younger and then couldn’t as an adult.”  Things that she did in the past became difficult. She started to give up activities. “The pain can range from intense burning to bruise-like. Sometimes the searing pain will shoot down my leg.  It can make it impossible to dance. Sometimes, I can’t even go to work.” Eventually, LilliRose sought help by attending an outpatient treatment program for anxiety and depression. “It was helpful, but I knew that it was not enough.”

One day she decided to move forward by taking a more active role in her life.  She studied nutrition and discovered that certain foods made her condition worse.  “I love french fries, but if I eat them I know, I’ll have a flare-up the next day.”  She regularly went to the gym. She attended a meditation class. She started to learn things for the sake of learning.  “I have a friend who is a forest ranger. We go walking, and he tells me the most amazing things about the forest.” She changed jobs, she made new friends, she read more.  “I didn’t want to take medication for my depression. I prefer a more natural approach.”

LilliRose feels fortunate that she has very supportive parents and a wonderful and understanding boyfriend. Although she would like to feel even better, she has made progress dealing with her anxiety and depression.

Her HS has impacted her in a variety of ways, but not all of those ways are negative. It has made her acutely aware of other individuals who suffer from physical and emotional illness.  She plans on going back to school next term, this time to study business. Her goal is to eventually open a center where people of all types of disability can gather. A place that will provide dance and art therapy.  A place that will be a home for rescue animals who have nowhere else to go.”I have two dogs, and they are always there for me when I’m having a flare-up. Animals can be healing” The center will provide a welcoming place anyone who suffers from a disability.  A place where they are accepted, understood, and helped.

Thank you LilliRose for talking to me.  

If you have a story that you would like to tell, please contact me at SPAMmike_kuna@hotmail.com (remove the word SPAM in the email address).

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LilliRose