WHAT I have, not WHO I am

All my life I have been a writer and artist. It’s how I find I can share my unique view on life and understand my own inner battles. One of these is the struggle to love my body for what it is and not what it should be.

I have been teased about the shape of my body my entire life. I am far from a size zero in any article of clothing. I’m taller than most of the girls I went to school with (except the ones who went on to play basketball) and the hair on my head was always some form of fashion disaster. Later my arm, leg, armpit, and anywhere else that could grow hair would be the source of cruel torment in locker room situations. But, when I realized that I could control where my hair showed, for once, I felt in control. It was like I had dived into some sort of 1950’s female hygiene propaganda and it made me feel like a woman to be hairless. I had finally found something about my body that could look like the pictures in the magazines!

That feeling wouldn’t be with me for long… ten years, TOPS.

Joke for you!

What does Swiss cheese, the Pope, and my armpits have in common?

Answer: They’re holy!

In 2014, I was officially diagnosed with Hidradenitis Suppurativa, also known as Acne Inverse, is a chronic skin disease. I felt like my world had crashed. I had a feeling something was wrong for years. I would get these giant boil like masses under my arms, but my mom had always told me she got similar ones and it was just from ingrown hair. These felt different though.

At one point the severity of my wounds began to interfere with the artwork I was trying to create. I wasn’t able to lift my arms, type comfortably, and every movement I would make felt like I was slicing open my skin. I knew something wasn’t right and I couldn’t ignore it any longer.

A few years prior my brother had passed away from complications of Leukemia. His Leukemia had caused these little cyst like lumps to form in different places when he wasn’t taking care of himself. I was terrified that THAT was what I was seeing. I looked it up on the internet and was assured that the location of mine meant that it most likely was not cancer (for once, WebMD!) although, there was still a chance. Instead it pointed me to the very high probably it was HS. I was terrified of either of them, but I had made a promise to my brother that I would go to the doctor if I ever even thought there was a chance that I had cancer. Shaking, I made my partner at the time come with me to the doctor’s office for an appointment.

When the doctor heard what I described she nodded her head and said that it was a very unlikely thing for me to have HS because it was so rare. But, when she examined my underarms to take samples she changed her tune. There must have been something in the fact that my underarms looked like Swiss cheese that changed her mind. I can’t imagine why! I was formally diagnosed with HS at that point, and thankfully I had no signs of cancer.

HS causes these little sterile lumps under your skin, that dig deep, and can go wide and wild. I don’t want to get into the medical side of it too much except to say that moving your arms or legs and trying not to pop open these purple looking skin wells is fairly difficult. And, after they open, by themselves, you spend a good chunk of time making sure the wound drains properly and stays as sterile and unbothered as possible. This includes keeping fabric way from the sore to avoid rubbing of the skin that is trying to regrow. This brought up interesting talks with my doctor where I was told to avoid shaving and wearing bras with underwire, no bra’s if possible. It risked creating more harm than good. In essence I felt like I was losing the one bit of womanhood that I felt I could control. Cue every social anxiety, fear of judgement, and deep seated depression I had repressed. Every metaphorical instrument played a somber song as I left my appointment.

For the next few years I avoided the beach because I was afraid of staring eyes. I needed to keep my under arm hair and it made me extremely self-conscious. There was nothing I could do about the wandering thoughts from strangers. So I thought the only way to keep those questions at bay would be to wear sweatshirts, even in the 90 degree heat. I was constantly trying to cover up my insecurities, while also trying to keep the seams in the fabric as far away from my sensitive armpits as possible.

One night I had enough and cried to a close friend about how I couldn’t wear anything out of the house because I felt uncomfortable being judged for the way my skin looked, lack of bra, and all the hair. Her response was that their judgement only shows their own insecurities and that by showing my body some love it would give others permission to love themselves. She was right, and even though it took some time and patience, I started the journey to love myself again.

The last couple of years I have found friends who will go out with me and go up to bat against anybody that questions my lack of shaving. I am utterly grateful for them. There are mornings where I am strong enough, when I wake up, to brush off their stares and own my body. Most days I need a little help overcoming my social anxiety to even leave the house in a tank top. But the effort is there and that's what is important.

The truth in all of this is I know my body will always look like the cover of Holes, unless I decide to undergo surgery, and I have accepted my body for what it is. Although in all honesty, I know that what I struggle with is mostly internal dialogue. Also, from experience, I have learned that this generally means that there are other people out there that are going through the same struggle that I am. And they aren’t talking about it. They hide themselves away like I had done.

I need people to understand that I normally don’t talk about this without feeling defensive. Like I have to defend to my doctors my own choices on how I choose to take care of my HS. In reality, I didn’t make the choice to have HS, I just made the choice to not let it control me anymore. It’s not WHO I am, it’s just WHAT I have. I am every bit the same person I was before the diagnosis, I just have more scars than what I started with. I am still a woman. I am still beautiful. I still create artwork, when I can, and I still write, even through the pain. If I didn’t I wouldn’t be me. I am limited by it, yes, and it still makes me uncomfortable. But, despite this, I try to make the most of my life. I’m gonna be okay anyway, no matter where this diagnosis takes me, but letting my anxiety and mental health crash and burn lets HS win.

My life is not what people find in magazines. I will never be a spotless and hairless beauty reclining on a sofa like Kate Winslet in Titanic, BUT I can be me. And who I am is a crazy adventitious, ocean loving, tree hugging, book illustrating, and dedicated friend and author.

Anxiety and illness aside: I can only live one life so I have to make the most of it.

 ***How have you dealt with a difficult diagnosis? What helped and what didn't through the realisation process? Comment below ***