Hidradenitis Suppurativa is not a rare disease.
It is estimated that 1%-4% of the population has HS. It feels like a rare disease because it is simply unknown to many, Hidradenitis Suppurativa is just not yet part of society’s collective knowledge. When someone is diagnosed with Hidradenitis Suppurativa, it can be isolating for this very reason. Even many medical professionals do not know what HS is, and it can be the responsibility of the patient to explain it and advocate for themselves. If you have Hidradenitis Suppurativa, people in your life probably do not know what it is and cannot offer any advice. Educating people about HS is a steep hill to climb, but it can be worth it in the end.
I have had Hidradenitis Suppurativa for 18 years and it took me 12 years to really open up to my friends and family about what that meant for me. I was diagnosed at 17 years old, 7 years after my first HS flare. That was when I finally told my closest friends that I had this disease but I was not able to tell them what that means to me for several more years.
HS can be embarrassing. A main symptom of HS is recurring boils in private areas, such as the armpits, breasts, buttocks, groin, and thighs. These boils often open, leaking fluid and blood. The boils can be painful and reduce mobility. They can also be itchy and inflamed. This is part of why I did not open up to my friends and family about HS for so long. I was afraid and embarrassed.
My friends and family love me and they want to help me. After working with a therapist and building my confidence, I started sharing what life with HS is like with my best friend. She listened, attentively and quietly. She was patient while I got it all out. I was afraid that when I finally told people what I needed, they would not care. But she accepted what I said and asked how she could help. I just asked her to be there for me, to support me as I struggled to find better treatment and ways to manage. I also started talking to my parents more about the struggles I face while managing Hidradenitis Suppurativa. They became more involved in managing my health and started researching other treatment options. Having their support made me feel like I could take an active approach to managing my HS.
I want to say it was easy after that, but it wasn’t. I slowly shared bits and pieces of my life with HS to my different friends, my parents, and my brother. When I was 22, I had a skin excision procedure with a CO2 laser. This made me dependent on others and forced me to tell people what I needed. Toward the end of my healing, I went on a road trip with my two best friends where they had to manage all of my wound care and boy, did they show up in a large way. They tag-teamed a pretty gross wound in my armpit that needed to be kept dry and clean while we swam in oceans and walked down Bourbon Street.
Out of necessity, I was forced to show them a very vulnerable side of me and they did not balk. I was afraid that my friends would not be able or willing to meet my special needs but they proved me wrong. Since then, I have been open with them about HS and my other health needs.
The confidence I gained from that experience helped me open up more with other friends and family. I remember telling my mother that sometimes I cannot get dressed for the day because it hurts my HS flares and she immediately changed her approach. I told my father that sometimes I cannot walk fast or as long as he can because of my scars or flares. He now checks in with me and asks me if I need a break. My friends and family ask me how I’m doing and if I need anything and that means everything to me. It means I can be more in tune with respecting my body and needs.
Now, when I have a difficult HS flare, I cry in the bathroom with my friends and let them see my vulnerability — just their presence changes things. When I am struggling with my doctors and medication, I can call my friends and rant to them, knowing that they feel my frustration with me. When I need to make a difficult decision, I discuss all the implications with my parents, both physical and emotional, and can make a decision together with them.
The people that you can trust with your HS will make themselves apparent through their words and actions. They will show up and take the time to educate themselves and ask you about your limitations. If you open up to a friend and they do not show you that they can be trusted with your HS journey, don’t despair. Now you know that this is not a safe person for you and you can change how you approach your relationship with that person.
I had a difficult week last week. I would not have gotten through it without the support of my friends and family. I was with my cousin when I found out I could not get a procedure done. She sat in the car with me and listened while I cried and talked about my frustrations. My best friend texted me to see how the procedure went and was angry on my behalf when I told her it did not happen. I called my parents and we came up with a plan to move forward with a different option. Without my trusted friends and family, last week would have been a lot harder and more isolating. As it is, I was able to process my feelings in a healthy way with their support.
Showing my friends a vulnerable side to me was scary but I am glad that I did. I feel closer to my friends and family and am grateful for their support with my journey with HS. Now, they are additional advocates for me. They also spread awareness about Hidradenitis Suppurativa, so that HS may be better known and better treated.