Before diving into the content on this HS Hope Club blog, I want to share with you, my dear fellow warriors of this chronic and autoimmune disease, Hidradenitis Suppurativa, my "why."
But wait, for you to understand how I got here, some context is needed.
On August 7, 2023, I decided to start my personal blog about Hidradenitis Suppurativa and named it HS Hope Club. Thrilled, I designed my logo, established my brand identity, bought the domain on Google Domains, and published my first post: "Welcome."
I obviously started with zero followers, but little by little, Instagram's algorithm began suggesting accounts for me to follow. That's how I began building the HS Hope Club community and connecting with HS Warriors worldwide.
I remember the sheer excitement I felt when I reached seven followers. Unbelievable! You might say, "That's nothing" but put yourself in my shoes. This is the first time I've dared to talk about a disease I've battled for the last 20 years of my life. And it turns out, there are people like me, all over the world, looking for a community and connection.
As of writing this journal entry on September 24, 2023, we're already 160 HS Warriors strong on HS Hope Club's Instagram account! That means we've grown by 31% EVERY DAY for just 48 days. Honestly, my heart flutters with excitement for the beautiful community I know we're going to build together.
So first and foremost, thank you for being here, thank you for not giving up in the face of adversity. 💜💪🏻
✨ Side note: (If you stumbled upon this post by accident and don't know what Hidradenitis Suppurativa is, but you or perhaps a loved one has experienced abscesses or boils due to ingrown hairs in the armpit or groin area, click here to learn more about this common skin condition).
I remember when I started HS Hope Club, I had decided not to show my face because of the "shame" 😕 of someone knowing I have this disease. However, after seeing profiles of other men and women going through the same thing and being authentic on social media, it felt like a safe space. 💜
So, my first set of stories after publishing the welcome post was to share a bit of my story. I posted a photo of my armpits:
And finally, a photo of me:
To this day, these stories are still highlighted on my Instagram, hey!, follow me if you want to follow along my journey.
And just that same day, my sister asked me, "Why are you posting those stories?"
To which I replied, "Why, what's wrong?"
"Well, why are you showing that you have that in your armpit? I mean, what do you want people to say? It's embarrassing."
"Because people need to know about the disease."
Our interaction ended there. 😔
✨ And that's when my manifesto was born. ✨
Why did I start my Hidradenitis Suppurativa blog? Why did I found HS Hope Club? Why did I show photos of my scarred armpits?
💜 I do it for my 11-year-old self, who thought these painful "lumps" were just a part of puberty and had to improvise answers if I accidentally raised my arm wearing a tank top. "I cut myself shaving," "I have an ingrown hair," when I had no clue what was happening to my body, why it hurt so much, or why it wouldn't go away.
💜 I do it for my 15-year-old self, who, after four years of pain, pus, and scars, decided to Google "fat abscesses in armpits." And found forums and blogs where, with tears in my eyes, I read "Hidrosadenitis Suppurativa" (another name for Hidradenitis Suppurativa). With tears in my eyes, I read all the testimonials from people going through the same thing, some with mild cases, others with very severe cases where, in addition to the disease, they also have severe depression. I remember I couldn't stop crying; it was a strange feeling. For the first time in my life, I knew what was wrong with my body, but at the same time, I discovered it was an incurable disease that I would have to live with for the rest of my life.
💜 I do it for my 16-year-old self, who in high school had to run out of the classroom to the bathroom after hearing her classmates say, "It smells horrible, what is that?" To discover that her abscess had burst and was full of pus and blood. I didn't know how to take care of or clean my wounds. I remember I stayed locked in the bathroom until everyone left.
💜 I do it for my 17-year-old self, who, after finding the name of her disease, ran to her dad and excitedly said, "Dad, I know what I have!" And asked him to take her to the dermatologist. Our surprise was discovering the ignorance and complete disinterest that science and medical staff had towards this disease. To discover that the dermatologist didn't know about the disease, after showing her my armpit and telling her my symptoms, she was simply speechless. She just turned around and started looking for books. My dad and I looked at each other sideways, bewildered, perplexed, and above all, like saying, "What am I doing here?" When she finally found the book she was looking for, she began to leaf through it. Still without mentioning a word, all that took about 20 minutes in her very dark office, by the way. She kept leafing through, when bewilderment got the best of us, my dad thanked her and she apologized to us, because "she had heard of that disease but had no treatment to offer." And so began our pilgrimage with countless dermatologists, general practitioners, trying to find a cure or at least something to stop the outbreaks of fat abscesses in my armpits and groin. Nothing, complete ignorance and lack of empathy.
Some doctor I remember prescribed sulfur water baths (they were blue pearls), antibiotics, and creams. From that experience, what stuck with me the most were two things: 1) that the routine did not work at all and 2) that it had a cost of 10,000 Mexican pesos a month, which was unaffordable for me at 16, as a student and while my parents were going through financial difficulties.
A friend's mom is a nurse and took me to a plastic surgeon. The surgeon told me that he could not operate on me because there was no guarantee that the disease would not recur and, in addition, I would lose mobility in my arms and could not open them, like a chicken.
💜 I do it for all the nights that, during adolescence, crying in pain, I wondered: "Why me?", "Will someone be able to love me like this?", "Will I be alone forever?", "What will I do when I want to be intimate?".
💜 I do it for my 33-year-old self, who, hoping to find a treatment, fell for a charlatan who proposed a treatment of 30,000 Mexican pesos every three weeks to inject stem cells. Months later, it was world news that these treatments have no scientific evidence to cure or prevent any disease. Fortunately, I didn't have that amount at the time and only got rid of 10,000. The stem cells were extracted from my knees and injected into my face, skull, and armpits. Although I did not ask for any facial treatment, I felt forced, scammed, and violated. The knee pain lasted 2 weeks, because to extract the blood they puncture the bone. I left the "innovative treatment" limping and with a bag with 10 tubes of blood to use them as a "mask" on armpits or face. I used it once, it disgusted me a lot and those tubes are still in my refrigerator because I don't know how to dispose of them.
💜 I do it for the Spanish-speaking community, because most of the scientific or serious resources about Hidradenitis Suppurativa are in English and people who speak Spanish need to know, need to be informed. It is a community that must be attended to, cared for, and procured. Access to health and information should not discriminate according to your geographical location, because this disease does not. And ignorance can only be defeated with scientific and truthful information.
💜 I do it for all the 11-year-old girls who start to see abscesses in parts of their body and don't understand what is happening. So they know that there is nothing wrong with them, that this is just another disease and that they are not alone. I do it for them so they don't have to feel the shame, confusion, and isolation that I felt. So they can have a community and resources that I didn't have. So they can understand that they are not 'dirty' or 'bad,' that they are not alone in this journey. I do it so they can find the courage to speak up, seek help, and not let this condition define who they are. I do it so they understand that while this will be a part of their lives forever, there are ways to manage it. There are ways to stop the abscesses from flaring up for long periods of time, and it's possible to live a happy and fulfilling life despite having Hidradenitis Suppurativa.
💜 I do it for all the people who have been ignored by the health system, who have been victims of charlatans, who have been victims of ignorance and lack of empathy from doctors.
💜 I do it for all the people who have been victims of ignorance and lack of empathy from society. Because I know that every story told, every experience shared, is a step towards awareness and understanding.
💜 I do it for all those who have had to hide their pain behind a smile, for those who have had to make up excuses to avoid uncomfortable situations, and for those who have had to endure judgmental looks or insensitive comments.
💜 I do it because I want the next generation of HS Warriors to have access to better resources, treatments, and above all, a community that understands and supports them.
💜 I do it for my 34-year-old self (present time), who has not given up, and I decided to search again for "Treatments for Hidradenitis Suppurativa 2023," and discovered that there are already foundations, studies, hospitals, companies, influencers, Facebook groups, TedX Talks, YouTube videos, podcasts, and a community of thousands and thousands of people sharing their stories around the disease, there is still no cure, but there are treatments, and the more people raise their voices, the greater the hope becomes.
💜 And most importantly, I do it because every word I write, every story I share, is a way to heal, to accept, and to move forward. It's my way of saying: "My existence is worthy of love and happiness, and I'm not alone."
Those are my reasons.
Now you know me, no matter where you are from, welcome to the journey! 🌍 And yes, obviously, I write this with tears in my little eyes of emotion, and with three abscesses strategically scattered, ha ha, one in the right armpit, another in the groin and another right on the butt crack, I hope you are doing very well, and we continue reading, this is just beginning.
Thank you for being here and stay strong, stay hopeful.
🙋🏽♀️ Ana Pao, founder of HS Hope Club.
