"But you don't look Sick..."

These are the words I hear time and again. Most people can’t see my pain, discomfort and limitations. You cannot tell I had a stroke, you can’t see that I am completely blind in one eye, no one can see that my heart and my lungs are damaged and limit what I can physically do. You don’t see that my blood clots so easily that I ingest rat poison every day to stay alive. You don’t see the side effects I endure from the medications or know how horrendous I feel.

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FUCK these diseases, all of them!!! The last five years I have struggled to stay in the game. I have attempted to run the business I worked so hard to build and keep the reputation I earned. But I am tired y’all. I can’t keep up. I no longer want to. This last year has done me in.

Do you know how many timesI have heard people say Covid is no big deal because only sick people risk death. That is literally ME! This year has left me feeling disposable and irrelevant. My life and so many of my fellow Spoonie Friends have been discarded by the masses. It feels like shit, everyday we are told we aren’t worth saving.

These images were taken after a recent hospital stay. My body is swollen, bruised, battered, scraped, scarred and exhausted. Some of you may remember I was scheduled to have procedures on my lungs last Spring out in San Diego. That never happened though because covid changed all of our lives.

As we reopen and life resumes I am reminded that I am not nor will I ever be on the same ground as those around me. Health is a privilege I don’t have. Time is a privilege that anyone living with a terminal disease understands is cherished. It is our most precious resource.

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These words and these images are more for myself than anyone else. They are raw, unflattering , some would say disgusting… but they are me. This is my body now. This is where my body is today.

It has survived extraordinary trauma and for as much agony as it gives me it also allows me exquisite pleasures. The path to loving our body will never be in how it looks but in how it allows us to live. And even now in it’s mangled mess I am grateful for this body and the life it allows me to have…. even if it’s not the one I imagined <3

Chronically Beautiful - Samantha

This September marks my 20th year living with Type 1 diabetes. I was 8 years old, it was Labor Day weekend, spending time with my cousins, when I just felt so thirsty and constantly weak. All I wanted was to drink Big Red and could not explain why. I didn't want to eat and anything that I tried to eat, I couldn't keep down. With my mom's intuition, she suggested to have my blood sugar checked. It was way over the normal and decided to rush me to the hospital. The next two weeks I was learning that my life had changed forever; I was scared, overwhelmed, and confused. However, I knew at that point that I was given a second chance and believed that it was given to me to serve as an advocate for Type 1 Diabetes and help others with this condition manage it.

Today, I am a Clinical Specialist/Dietitian at a Diabetes company that creates insulin pump therapy tools, such as insulin pumps and continuous glucose monitors (CGM), that I also wear. I reach out to users of these products and follow up with them and their management to ensure that they are getting the best performance of the product to guide them to achieving good standards in diabetes health. Today I am also my healthiest with Type 1; I use two medical devices (the reason I call myself the Bionic woman) to manage good glycemic control, I workout almost 5 days a week in Barre and Pole Fitness, and I have a balanced diet with some room for cheat foods (PSL for life).

This past year I have struggled to be positive about my image since my body has changed after adding another medical device to my body, achieving better blood sugar control, and gaining muscle tone from pole fitness. When I first glanced at these pictures, all I could think was "Wow. Is that me?" After realizing that it was definitely me, the negative feelings toward my body image had disappeared and I now feel that I am a sexy, powerful, and fearless woman. From now on, with these pictures, I will never forget that. Whenever I am feeling down or lacking self confidence, I will look at these pictures and think "DAMN...that's me, a sexy, powerful, and fearless woman".

Chronically Beautiful- Mary

'“Based on first impressions, you would probably think I am a bitch. I often ignore people who are speaking to me. Not on purpose, you see, but because I didn’t hear you. What’s more painful? Asking “what?” over and over and having you repeat yourself? Or me admitting over and over to you that I’m partially deaf?  I would feel myself dying inside with each interaction. I sometimes dread social outings, not because I’m an introvert, not because I don’t like people, but because the effort to listen is absolutely exhausting.  The effort it takes to grasp the words before they get lost while trying to find my ears. I smile. I’m lost and confused, but I still smile. “If it’s important enough, it will eventually make its way back to me,” or so I tell myself. I was born with hearing loss; It runs in my family. Funnily, I didn’t find out till I got into high school and didn’t get hearing aids till college... and still then I only wore them when I “needed” them. Which was all the time but the humiliation of being so young and wearing hearing aids was just too overwhelming.  My ears were too small for the internal aids so my only option was the ones that go behind the ears. The very visible ones. I didn’t want to be different. “Only OLD people wear hearing aids” I would tell myself. Old people and me. It’s hard for hearing people to relate to the non-hearing world. People assume that hearing aids magically make hearing perfect. “Can’t you just turn them up?” I hold back tears and reply “Can’t you just speak up?”

I used to often daydream about what doors would open for me if only I could hear the world.  I used to let my hearing hold me back from doing things in life that I thought one could only do with perfect hearing: joining the army, becoming a nurse, a teacher, anything in a public setting.  I’ve let my hearing loss be the stop sign for many of my dreams and aspirations.

At some point, I made the decision to not let my hearing loss define me as a person and instead accept it as a part of me and my journey, taking away its power to hold me back. I no longer wait to HEAR opportunities that are available to me, I create them.  I’m now a yoga instructor and I truly feel that it was my calling all this time.  In hindsight, maybe a more silent world allowed me to more easily tap into that quiet, spiritual center that helps me be a really good instructor, and in turn helps me lead others to that place.  So many people need help blocking out the noise that I used to pray to hear. The most beautiful things in life aren’t meant to be seen or heard but felt by the heart. I choose to let love guide me, to take action from the heart and to share kindness with all beings, because on some level we are all dealing with some kind of struggle in life. 

Love trumps noise. “

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About the Chronically Beautiful Project

Chronically Beautiful is a project I started as I battled my own illnesses. It is my hope that this project shed light on the diseases that change our lives and that it will help change misconceptions about being chronically ill and or living with disabilities . Additionally I hope to inspire those facing health challenges to live their best life.

If you would like to participate in this project please submit your story to me first by emailing me at theintimacyartist@gmail.com

Note... You do not need to have a visible illness or disability to participate. I want to share people's stories with all illnesses and disabilities.

-Angela Michelle

Crissy - Chronically Beautiful

“Hello my name is Crystal Marie Cantu, friends call me Crissy. I am 30 years old woman who lives with a disability. I was diagnosed at 7 years old, with Muscular Dystrophy which is a progressive weakness in the muscles. I have had this disease for most of my life. There are different types of Muscular Dystrophy but recently my doctor tested me and the results came out that my new diagnosis is Limb Girdle Muscular Dystrophy, which affects the center of my body or the hips, quads and shoulders: the main areas that give ability to move your legs and arms. However, there are other areas that are weak in my body as well. So my diagnosis is a bit more rare than others and is still being tested. Although I was diagnosed with MD, I didn't start using a wheelchair until I was about 19 or 20, so before that I was still walking but you could tell it was getting more difficult for me to move at a normal pace. The reason as to why I started using my wheelchair was because I had a bad fall that caused me to bust my head open and need stitches. So for safety reasons, it was a must to use a wheelchair.

Sounds intense huh? Well at times it is but it doesn't overpower my life. I still try to do my best to just live my life as best as I can. I tell everyone that now my life is like a bucket list these days. There is so much I want to do before I can't anymore. I don't want to miss out on the things I thought I might not be able to do. Now I just do it! It's so easy to dwell on your disability, limitations are just screaming at you and you just don't even want to try.Trust me, I've been there and I still have those moments; no one is perfect. But most of the time I just try and experience anything that I can. With the help of my close family and friends, I have been able to take a road-trip to Los Angeles California, fly on in airplane to Las Vegas, go water skiing, finish college with an Associates Degree and so much more.

Anything is possible and sometimes you have to ask for help, so don't feel ashamed about that. I know it's difficult because all of us want to be a 100% independent but sometimes that not the case. But if you have people there with you to support you and be there for you, take the help. Not because you need it but because they are willing to help you.

Disability can be a struggle but it does NOT define your life and who you are as a person. So live your life for YOU.

The boudoir session was honestly the most amazing experience I've EVER had. I've had other photo-shoot sessions but this one was so easy and calm for me. Sometimes it's difficult for me to be in front of the camera. It's like an awkward feeling of not knowing how to pose, especially since I am disabled. So my poses are a bit different than an able-body person. So when I got there I was a bit nervous but once we started, Angela said for me not to worry that she would guide me through it and she did! She made me feel so much confidence in myself and comfortable. She knew what would work for me and my body. Every time she would take a shot of me, she would always have something positive to say which made my experience easier. Throughout the session, I did need help but it felt smooth and had such good vibes in the studio setting. I don't think I have ever had that experience before and I feel like that's why she was able to capture beautiful photos of me! I wasn't in my head thinking too much about how I looked, I was in the moment and just felt sexy, confident, content and ravishing.”

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About the Chronically Beautiful Project

Chronically Beautiful is a project I started as I battled my own illnesses. It is my hope that this project shed light on the diseases that change our lives and that it will help change misconceptions about being chronically ill and or living with disabilities . Additionally I hope to inspire those facing health challenges to live their best life.

If you would like to participate in this project please submit your story to me first by emailing me at theintimacyartist@gmail.com

Note... You do not need to have a visible illness or disability to participate. I want to share people's stories with all illnesses and disabilities.

-Angela Michelle