23 February 2015

Appearance Diversity: Jess's story. "People still stop on the street to stare at me, and to make comments about my physique."

I used to mentor this amazing young woman at the hospital. Jess is one of the smartest, caring people I've met. She is an incredible writer and I am so glad she's shared her appearance diversity story today. Jess blogs at Kisses from the Fight - you have to go read more of her writing. 

I took her to see Rick Guidotti in 2012. When he took her photo, she just blossomed. What I didn't realise that day was the impact that Rick's presentation had on her. It was a combination of seeing others with her condition and Rick's way of making everyone feel beautiful that made her blossom.

Jess has Marfan Syndrome. February is Marfan Awareness Month  - so it's very timely she shares her story. Meet Jess. 

“In other words, I would be giving in to a myth of sameness which I think can destroy us”
~ Audre Lorde.

"Had you asked me, I would have given in. I would have pleaded with you.

Allow me the gift of sameness. I do not share the sentiments of Lorde; it is difference that will be my undoing.

But that is the uncomfortable truth of my life. The premise of being someone like me is that you must never be granted a choice in the matter. I am but an anomaly, a lack of intention lovingly spat by my parent’s genomes. One in five thousand; these are the chances of being someone like me. And by being someone like me, what I really mean is that I am the person nobody else wants to be.

My name is Jessica Marshall. I am 22 years old and studying Psychological Science. I live in Ballarat and I am Mum to a golden retriever named Willow, the love of my life who is all paws and no common sense. My eyes change colour in the sun, and I cannot sing. 

I also happen to have Marfan Syndrome.

Marfan Syndrome is a genetic disorder which affects the connective tissue. Blood, bone, skin, muscle and organs lay splayed and wanton, teasing for the trauma that is a direct consequence of having faulty Fibrillin. (For those that are not medically minded; Fibrillin is the glue of the body. It’s kind of a big deal).

I am the elastic girl, the Gumby, the walking rubber band. Marfan Syndrome affects every person differently. There are different mutations, different severities. It is thought that I have my own mutation, licked and stamped with my own unique fingerprint. I could explain the science behind it, the reduced life expectancy, the aortic dissections, the 6 foot plus heights and bones where fat should rest. But you would be none the wiser as to the reality that is my life. Instead I shall tell you the truth.

When I wake in the morning I spit my lungs into the basin and scrub the mucous down the sink, a consequence of multiple pulmonary nodules (Have you ever heard a more attractive description?). I will place whatever joints have dislocated in the night while I slept into their respective hollows. Tablets will be swallowed in tens, and I shall try to stay awake past ten am. Uni classes will be attended and I will ask someone to open the doors. There will be three rests as I walk to my car and finally when it is time to rest for the day, I will gasp as the blood regurgitates backwards into the valves of my heart.

And so it goes.

When Carly initially asked me to write a piece for her blog about appearance diversity, I sat frozen, fingers hovering above my laptop keys. I did not have the right. What six foot, size six blonde truly did? I imagined you, the reader, shaking your lobes from left to right. You would tell me. Find another story, another piece. This is not yours to own. I told Carly this and she replied “I remember what you said to Rick Guidotti”.

Two or so calendars ago I attended The Other Film Festival with Carly, and during the day I took my seat along with many others to listen to a presentation by Rick Guidotti. As Rick’s slideshow presentation of his work filled the screen, I began to realise that I was watching a slideshow presentation of myself. Of course I wasn’t, not really. But it was the first time that I had ever seen portraits of other people with Marfan Syndrome.

And they were wonderfully and beautifully flawed.

At the conclusion of the presentation Rick encouraged people to speak. Sick and mucous nestled in my mouth in equal measure, and my hands shook as I clasped onto the microphone for a false sense of courage. It had taken me 20 years, but it was time to tell my story.

There was the day that I walked down the street, fourteen years, blue shorts and matching eyes. A group of males wound down their window and for a moment I allowed myself to believe that they would wolf whistle. Instead they threw a milkshake at me and called me Spider Woman. 

High school was a combination of having “Anorexic Slut” shouted at me across the locker rooms and being told by friends not to cross my legs because I looked disgusting.

My proud parents sat through dance concerts (In which I showed minimal talent, but they beamed regardless) and were confronted by other parents wanting to know why they didn’t feed me properly.

There were the doctors who accused my parents of abuse, and threatened 9 year old Jess with a nasogastric tube unless she started eating properly. 

There was the day that Daddy took me to the beach and I wore my first ever bikini with pride. An entire jetty came to a standstill to point at the bones within their midst. As I sobbed, Daddy told me that when I was 18 I would be paid thousands to walk catwalks. Two years later I was in a wheelchair, my catwalk forgotten.

There was the Uni class I walked into to find the entire class discussing my body, too much limb, not enough flesh. I still remember how hot my cheeks felt.

I could go on of course, fixate on all that I was led to believe. But years in an Eating Disorder program have helped me to understand that their thoughts and opinions never mattered quite as much as my own. The irony that their comments about my emaciation led to me developing an Eating Disorder is not lost on me. Much of society encourages the idea that despite being different, we are all the same, and that we are all beautiful. But this is not true. I am different. I am the mutant, the anomaly, the woman who truth be known, was never societies idea of normal, nor beautiful. I do not need to be the same, and if I were to go back and speak to thirteen year old Jess who sobbed in front of her own reflection, I would tell her that she did not need to be beautiful in her sameness, or beautiful at all to make it in this world.
I am in my fourth year of University and have a GPA of 6.8 out of 7. I have founded a not for profit organisation which supports adolescent girls living with Chronic Illness. I date, I make love and I fall out of love in quick succession, not always in that order. People still stop on the street to stare at me, and to make comments about my physique. My condition is progressing, and I may never have children. I will be monitored for the rest of my life to try and predict, and prevent, my aorta tearing in two. I spend Saturday mornings drinking coffee at dog socials, and I do not remember normal.

Perhaps you are 13 year old me. Perhaps you are 40 year old me. Chronology aside, the hot shame of believing that you are somehow less because of appearance diversity feels all the same, regardless of the age of your bones. You may not be sameness and you may not be beautiful.

Look at this photo of me being photographed by Rick Guidotti.

Now tell me that you still want sameness."


  1. Jess, you write so beautifully. I knew a little about Marfan syndrome from uni but I didn't realise that day to day life was so painful. The world is crazy- there are many women who long to look like you, and I believe some of the comments you hear are from a place of jealousy. But I don't understand why anyone, anywhere, considers that making comments about another's appearance is appropriate.
    I think it is wonderful that you are studying psychological science. With the experiences you've had and the remarkable mind you have, there is so much you can offer.

  2. Thank you for sharing Jess. Your strength of and your beautiful words are inspirational.

  3. Absolutely beautiful writing from a clearly beautiful soul.

  4. What a gorgeous person you are Jess! Thank you for your story.

  5. What a beautiful and brave young woman - as are you Carly.
    Wishing you both so much positivity and success.

    Amber. x

  6. Wow Jess you are a incredibly talented writer. people piss me off with their need to dissect to appearance of others. Strange creatures us humans. Thank you for sharing your story and for educating me. Beautiful soul.

  7. An empowering piece and thank you so much for sharing your story because personally I have been motivated to appreciate myself for who I am more. You represent the strength that every human being must have. Continue being the best person that you are Jessica.

  8. I have no words, bar for thank you for sharing and hopefully opening the minds of others. Much love to you.

  9. As Carly shares these posts I learn more and more! Thanks so much for your story Jess, you write beautifully

  10. So beautifully written and I am dead jealous of your 68 GPA!

  11. Thank you Jess, I will use this article in the future to demonstrate skinny shaming. My daughter and I have Elthers-Danlos Syndrome and have always been thin and bony but not by our own doing it is just how we are built.

    Now that I am middle aged and due to medications I now weigh 70kg and I find that I am accepted so much more in all social situations even in getting help in retail. My daughter however at 21, size 6 and 48kg is told all the time to eat even by complete strangers and to make it sadder her Dads family who even though knew me as a teenager and saw me at the exactly the same size persist in bullying her about her appearance. This subject came to light when the song, All about the bass was released, my daughter and I got into many heated discussion about how can someone sing a heat song that has the words 'skinny bitch' in it, imagine if it said 'fat bitch'?

  12. Jess you epitomise beauty, not in your stunning aesthetics though you're a sight to behold!
    Your beauty is priceless, it's honest and raw and it can't be faked or bought...
    Your beauty shines from your compassionate heart
    Your beauty is reflected from your selfless soul
    Your beauty is encapsulated in every consider word of wisdom
    Your beauty pours from your intelligent mind
    Your beauty just radiates from you, it is you and all that you are!
    I know that you are wise enough to realise that this is the type of beauty we all should try to emulate.
    You've seen me post to my children that the most important opinion of you is your own, be positive and honest in your self affirmation! I hope the adult you looks yourself in the mirror and loves who she sees, that you can look yourself in the eyes and take pride in the wonderful woman staring back at you, we all have flawed genetic coding in some way or other but they aren't what define us, although the impact of growing with faulty design can influence who we become. You know you aren't Marfans, you're Jess and in my opinion you fight to be the best Jess that you can, you my dear are inspirational and I'm blessed to interact with your awesome self.
    Laura xxxxx

  13. As you've written so eloquently here, Jess - you are not your dis-ease. No one that I know is defined by their illness. I've had the skinny taunts when I was waiting for a double lung transplant for Cystic Fibrosis, and was bordering on 35kg, and I've had the fat taunts post-transplant when I blew up like Bert Newton from massive doses of steroids that saved my life.

    I often look at fellow poet Andy Jackson with affection and admiration because he JUST GETS ON WITH SHIT. Just like you do. You radiate love, joy and light from your spirit and I wish you all the best with your life, your study, your health and your dreams XO

  14. I'm not going to lie,to be honest it's hard to pity someone like this or see them the same way as other disorders that affect a persons looks because I'm sure Jess gets just as many comments,and probably much more so,from people complimenting her appearance than nasty/negative comments.
    She possibly gets more comments mentioning her beauty in a month then some women get in a lifetime.
    With other disorders people only get negative comments/negative looks.
    This does not diminish Jess's personal hurt experiences or mean it's ok though to ever say hurtful things to people like Jess out of jealousy or nastiness etc.
    At the same time though,I strongly believe society needs to change where we no longer "worship" a certain body type and no longer imply that tall,skinny girls will become models.
    Either the modelling industry should "go out of fashion" altogether or alternatively,if it's still going to exist,then it should involve women of all different heights,shapes and also ones not traditionally/stereotypically pretty too.
    On the one hand,we say external looks shouldn't matter but then on the other hand we mention or compliment people like Jess on her outer beauty...it sounds like an extreme mixed message especially to impressionable girls or women who feel they don't measure up.
    Some people try to say the old lie that everyone is beautiful.Thats true for inner beauty but is BS when we are talking about outer beauty.
    Everyday people down the street would say that Jess is beautiful but they wouldn't say it for women with other types of conditions unless they were saying it out of pity or being politically correct etc so if we are really trying to scrap the notion of outer beauty shouldn't matter or women shouldn't be valued on it,then people should stop commenting on certain womens outer beauty.


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