The Early Sign: My First Symptom
When I was eight years old, I experienced my first HS symptom: a boil almost the size of a golf ball on my left thigh. This boil had been growing for quite some time, and the more it grew, the more pressure and pain I felt. Soon, walking became difficult, and my doctor recommended removing it. My doctor removed the large cyst, and we assumed that I would only have to deal with the nasty scar that now sits right below my shorts for all to see. Little did we know that this was the first symptom of what would become a lifetime battle with a skin disease called Hidradenitis Suppurativa.
HS Unveiled: What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa, or HS, is a chronic skin condition that results in painful, inflamed cysts under the skin’s surface. These painful boils usually appear in areas where the skin rubs together, such as under the arms, in the groin area, or under a woman’s breasts. These boils can be as small as an ingrown hair or as large as an orange. They are typically filled with fluids and blood, which often drain on their own or are surgically removed.
HS typically affects women in their 20s to 40s, with some exceptions. Being eight years old, I was not the typical patient, so they did not diagnose me immediately. It wasn’t until later that I discovered exactly what I was up against. Soon enough, the boil returned, but it wasn’t just one this time. Eventually, the top of my inner thigh was covered in boils that would tunnel under the skin to connect. These boils would go through periods of being less inflamed and more inflamed. For the most part, since I was eight years old, I have been in pain due to these flare-ups.
How HS Changed My Childhood
I was an active kid, always doing sports or playing with friends, but HS changed everything. There were so many days when I couldn’t do the same things as my friends. Riding a bike or wearing a swimsuit were activities that most kids don’t think twice about, but they would bring me great anxiety and pain. My friends would be curious as to why I couldn’t always join in the same activities as them or why I was in pain… I never knew what to say.
Sports, Scars, and Strength
As I got older, the embarrassment continued, and the pain grew worse. I became an avid athlete, competing in water polo, swimming, and surfing. All of these required wearing a bathing suit — my worst nemesis. Not only did it cause me more pain to wear a bathing suit, but many of my scars were visible. There were many days when I was not only unable to enjoy the sports I loved, but even walking or sleeping brought me great discomfort.
When you experience chronic pain from the time you are 8 years old, you are bound to struggle with feeling healthy, not just physically but mentally as well. Mental health is something that was greatly affected during my late teens and adulthood.
Lessons From 16 Years of HS
I am now almost 24 years old, so I have been battling HS for the past 16 years. In these 16 years, I have learned a lot about how to cope with HS, not just physically but mentally. Something I would love for all HS warriors to know is that HS is not your fault, but it is your battle. For many, like myself, there is nothing you could have done to change the cards you were dealt, which is so hard. It’s hard to be diagnosed with a disease that has no cure and will most likely remain with you for the rest of your life. It’s hard to deal with day after day of physical pain and poor mental health because of it. These things are hard, and I will never tell you differently; however, we have a choice.
Encouragement for Fellow HS Warriors
We can let this define us, or we can change our point of view and fight. The latter is much more difficult, but trust me, it is worth it. No matter the severity of your HS, you do not have to allow it to run your life. Your doctor can discuss options for decreasing and easing your symptoms. From diet changes to prescription medicines, there are many options out there. The most important thing we can focus on when fighting is our mindset.
Life is beautiful, whether you experience pain daily or not. Dwelling on what is difficult only hurts you. Choosing to focus on the beauty and positive things in your life can literally change your life. You can’t always choose to be happy, but you can always choose joy. Some of the most impactful people in my life went through difficult battles, and the ones who made the most memorable impact on my life were those who chose joy in the most dire of circumstances.
