The Beauty and The Beast – HS and a celebration of body and spirit

Hidradenitis Suppurativa Body Image


As someone who has struggled for years with my own body image, mere words cannot express how I felt seeing Sherice McDavison’s photos, beauty, strength, inspiration, and freedom come to mind.

I want you to know I was there the day you chose to wear long pants on that hot summer’s day to hide the scars on your thighs. The morning you stepped out from the shower and stood in front of the mirror looking at the scars on your body crying, I was there. The first time you were intimate with a new partner and found yourself having to explain your wounds, I was there. I was there because while we are all unique individuals living with Hidradenitis Suppurativa (HS), we have had very similar life experiences. I have listened to your stories and heard your cries realizing the importance of what I am about to share with you today.

I have written and rewritten this story so many times in my head but have never been satisfied with the direction my words were taking until now. I hope today as I share with you my words, our words, you will find a sense of comfort, peace and perhaps one-day freedom, freedom from the beast.

For many years now I have struggled asking myself what is normal, what is perfect and who gets to decide?

Since the age of 9, I have gone above and beyond to conceal what was happening to my body from the clothes I wore, to the activities I participated in. I would always have this sense of dread and paranoia of what others would say or think if they saw my scars and wounds. At the time, I didn’t even have a proper diagnosis of HS and wouldn’t until nearly 30 years later. Not knowing any better I mistakenly believed what was happening was my fault as so many HS patients do.

To quote Sean Thomas, “Normal is how you perceive normal, not what others tell you is normal.”

Today, even after having a proper diagnosis I still find myself struggling with how I perceive my body, yes I said I, not others. After many years of worrying about what others would think or say about my scars and wounds, I have created my own negative perception of my body. I have never been shamed or made fun of for having HS. Like many HS patients, I was a master at hiding my condition so those thoughts inside my head have been all my own. I have essentially shamed myself.

To quote Agnostic Zetetic, “We’re not broken. We’re not in the wrong bodies. We’re not inadequate. We’re not lesser. We’re not unwanted. We’re not fraudulent. We’re not undesirable. That’s all just a set of lies we tell to soothe the experience of the prisons we put ourselves in.”

When I first came out about my HS to family and friends, sharing photos and having open conversations not one of them looked at me or treated me any differently. In fact, to my surprise, everyone has been very supportive. I felt like such a fool for believing it would be any other way. All of that dread, fear and paranoia that I have created in my own mind over the years has been nonexistent to date. I am not naive enough to think that my story is the same for all HS patients. I know that for some of you, you have had negative experiences. I know that possibility will always exist and that we may encounter some very judgmental individuals in our lifetime. But, through raising public awareness and education as HS patients, we can help change this. We have the power to do so.

As it turns out I have always known the answer to my questions.

The answer is what I perceive to be normal and my normal since the age of 9 is HS. While it may not be the norm for others and I may not have had a name for it until nearly three decades later, it is still my normal and will be until a cure is found.

Education and acceptance were the first steps to change the perception of my own body. I know it is going to take time to undo years of negative thinking, especially for those of us in the older patient bracket. So many of us never had any real answers or even heard of HS. I firmly believe that emotional healing is possible for all of us. As more public awareness is being raised the healing process has and will become easier for so many including myself.

Living with HS for over 30 years and advocating for other patients since my diagnosis, it has always been my mission to create change.

More and more I am seeing parents coming forward seeking information for their newly diagnosed teen. At this point in my life, I feel a responsibility as a veteran HS patient to future generations. I owe them support and leadership. I owe them public awareness, whereas a teenager myself there was none. My story does not have to be your story. I can’t go back in time but I have the ability to shape the future for other patients.

The following is dedicated to those HS patients who struggle with body image and for the newly diagnosed. I hope you find it as uplifting and inspiring as I have.

Hidradenitis suppurativa (HS) Wound Goddess

“Wound Goddess” | Photographer: Derrick L. Welton (@dlwvisuals)

Proudly Sherice poses with her arms raised above her head exposing her surgical scars simply titled “Wound Goddess”.

One day, while scrolling through my Facebook feed I was particularly intrigued by one young woman’s profile picture. I reached out to her and asked if she would be interested in sharing her story as many HS patients struggle with body image.

Sherice was officially diagnosed with HS by a medical professional when she was 20 years of age. However, like many others, she first started showing signs of HS when her menstrual cycle began at the age of 13. In the beginning, Sherice would mainly have abscesses appearing on her buttocks.

“Doctors would say it could be a staph infection, MRSA, a severe form of acne or from not properly caring for myself. I knew it had to be more when I started getting them in my underarms, upper back and groin. I knew there was something terribly wrong and it couldn’t be something I’ve done to myself. However, I was young and didn’t know how to effectively express myself. So being unintentionally ignorant, I listened to my doctors. I would literally scrub myself clean, ignoring the damage I was ultimately doing to myself and taking medications for something doctors couldn’t even properly diagnose.”

In the years that followed Sherice would be in and out of hospitals, seeing doctors and specialists often leaving appointments without any solid answers. It wasn’t until she was 20 years of age that she decided to open up to her father’s girlfriend, who coincidentally worked for a doctor who treated patients with HS.

“I remember sitting in my car on my lunch break crying, talking to her about how much pain I was in. I explained my symptoms to her and she knew right away exactly what I had. I googled this strange name that she mentioned over the phone, HS.”

An appointment was scheduled for Sherice and after many years of seeing different doctors, she was happy to finally have a name for what it was she was suffering from. Later, Sherice would speak openly about having HS.

Photographer: William Robertson (@vaderphotography)

“Before I publicly came out about my HS on social media, there was only a select few who knew that I had this condition. In the beginning, I kept it to myself for many reasons. I was too embarrassed first and foremost but also because I’ve come to realize people will only understand what they choose to understand and not everyone is instilled with compassion.

HS is complicated enough to deal with alone and we as patients hardly understand it ourselves. How could anyone expect me to be so open about something I knew so little about even though it is something that has altered my life on a daily basis?

People still remain unsure about the condition even with me encouraging them to research it however, I am so proud of myself for having the courage to unapologetically publicly expose myself. I do have family and some friends who may not understand but are in my corner with open arms no matter what. I appreciate every single last one of them so deeply.”

As someone who has struggled for years with my own body image mere words cannot express how I felt seeing her photos. Beauty, strength, inspiration, and freedom come to mind. Freedom most specifically and I wanted to know how Sherice was able to freely express herself, baring her scars to the world. I was certain that freedom of expression did not come without a price.

I asked Sherice if having HS has negatively affected the way she has perceived her own body.

“I may be all over the place as I answer this question. I am letting my guard down and being absolutely honest to raise proper awareness. For some, HS can be hidden with clothing and only exposed depending on what you wear and your level of mindfulness. There have been times where I had no choice but to uncover in front of others including doctors and if I became intimate.

I had to be open about my scars or wounds even if I didn’t know what was wrong with me. I knew it wasn’t something that was contagious and I made that very clear. I was never really questioned although I’m sure whoever seen me uncovered had many questions. I doubted myself a lot, I didn’t think I was worthy. I convinced myself that I wasn’t good enough because I didn’t have clear skin (as if clear skin was EVERYTHING) like many girls my age who didn’t hesitate to wear their tank tops or bathing suits without cover-ups. It didn’t matter how much a man would kiss my healed scars and say “you’re beautiful either way”. I have to admit, it was always nice to hear but when you’re alone looking at yourself in a mirror with this condition, all of that goes right out the window. I didn’t feel pretty. I didn’t feel clean. I didn’t feel like I was enough.

HS alone has made me so insecure about myself. It has hindered me from allowing anyone to truly love me. I’ve pushed any man away thinking eventually they’ll want something more, something better.

There was a time where I would post pictures of myself on Instagram or Facebook just to hear positive things from others although I didn’t genuinely feel it myself. Social media at one point was an outlet, something like a superficial therapy for me. Unfortunately, it only worked for the time it was posted and afterwards I was back to feeling negative about myself. Let’s face it, on social media you can show the world only what you want them to see and they’ll believe it. Some say a picture is worth a thousand words, I say in today’s time, it’s worth a thousand lies.”

Photographer: William Robertson (@vaderphotography)

Looking at Sherice’s photos and her obvious display of confidence I was curious to know how she became the carefree woman she is now. I asked Sherice what had changed in her life, what changed to turn those negative thoughts into the positive energy she radiates today?

“In May of 2017, my father was brutally murdered. He was only 42 years old. I already had surgery scheduled for my Hidradenitis Suppurativa across the country in Beverly Hills just 3 days after his funeral. I was alone for 4 weeks in the hospital in Los Angeles having had 4 procedures done before I was sent back home to Pennsylvania for recovery. Upon my arrival home, I knew something wasn’t right. My right leg was inflamed, burning, hot and red in color. I had a fever and that’s when I was admitted ambulatory to a local hospital. As I arrived, the doctors were taken back after looking at my incisions, knowing there wasn’t much they could do. Doctors don’t like going back into other doctors work. It was recommended I stay in the hospital and given IV antibiotics but I refused. I knew I needed to go back to see my doctor in California by morning or this wasn’t going to end well.

Sure enough, I was discharged and had to sign a paper stating the hospital was not liable if I were to die because I chose to decline their orders.

I was terrified honestly, not knowing what was best for me. I had just lost my father. I have a daughter who has lost a huge part of her life and now if I was to die, I worried who would be there for her. I’m a single mother and I’m sure this is a mutual fear for anyone raising children alone.

I arrived in LA the following afternoon and had immediate surgery. I stayed for 2 more weeks totaling 6 weeks in the hospital alone. I had no choice but to rethink my entire life. Everything that I had been through, what I was currently going through and what was to come. I worried a lot but what I’ve gained from all of this is a tremendous amount of strength.

I don’t care about my scars or any wounds that have occurred even after surgery. I am blessed and privileged to be alive, to be able to be here and share my story. I will die miserable worrying about what someone thinks about me.

Everyone will have an opinion about your life. Who cares as long as you’re truly living. That’s what I choose to do until God says it’s my time. I “ aspire to inspire before I expire“.

Before any of this happened I didn’t think this way, I didn’t feel as deeply. Although we may not understand why we go through what we go through in life, there is always a reason. I needed all of this to open my eyes to how precious life truly is regardless of its obstacles.”

Even those of us who work hard advocating for patients need a little inspiration. It has certainly been my privilege working with Sherice and getting to know her these last few months. Through our correspondence and Sherice’s willingness to share her story with me and the world, I have grown not only as an individual but also as a patient. I have learned through Sherice what it means to truly live and be accepting of oneself inside and out. I will leave you with this message from Sherice, for any Hidradenitis Suppurativa patient who may be struggling with body image.

“A person’s beauty is just a figment of the imagination. We are the creators of our own beauty and only a person who is connected with their true self-understands that beauty is only skin deep. It is your soul that will overpower physical looks any day. It is pure and won’t change over time like our appearance will. Until there is a cure for Hidradenitis Suppurativa we will always have our trying times. After seeing the finest doctor in Beverly Hills I am still a sufferer. From one patient to another, always remember we are not promised a perfectly beautiful life or body. The only thing promised in life is death but before the end of our book, there are chapters that ONLY YOU can make beautiful. Do not succumb to society’s vision of beauty. Our beauty has come from our scars. Our scars tell a story well before we open our mouths to say a word. They yell “ we are irrepressible, we are warriors, we are resilient, we are survivors.”

“Create your own beauty and prevail in all that you choose to do, NO MATTER WHAT!” – Sherice McDavison

Photographer: William Robertson (@vaderphotography)

Sherice is currently working on her own book project and pursuing modeling to raise public awareness about body image.

We here at HSAWARENESS.ORG wish you nothing but success in turning your dreams into reality. On behalf of our growing organization and HS patients around the world, I would like to thank Sherice for sharing her story. It has been my privilege and honor working with such an amazing individual.
Sincerely,
Fawn Griswold


PHOTOGRAPHER CREDITS:

Wound Goddess | Derrick L. Welton (@dlwvisuals)
Additional Photographs | William Robertson (@vaderphotography)


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