As I crack my eyes open first thing in the morning, I groan. It’s another day, a day I don’t feel good, and worse, a day I need to do something.
Regardless of the activity there’s always a part of me that is just too sick and tired to do what I need to do. However, today people are waiting on me. I drag my carcass out of bed, make breakfast with my friend, Lydia, who came down to help me. I whine through breakfast and pile myself into her car. Arms stacked with supplements and detoxers to get me through the day.
We arrive at the studio and I try to pull myself together. We start walking supplies up to the second floor and the planning begins. In comes the photographer, hair stylist, and makeup artists. It takes off instantly. Today is the first day of the Chronic Beauty photo shoot, and a step towards heightened chronic illness awareness in our community.
Chronic Beauty is an idea that came to me one of the millionth times someone commented on how good I was looking, when I felt like I was dying. I considered the opposite, and imagined what I would look like if I looked as sick as I felt and I sure didn’t like that either.
When you have the flu, it is empathetic to tell someone they don’t look good. You are acknowledging their problems.
When your illness is chronic, you don’t want to look bad, but you don’t want to look good either. So, I sought twelve women with different chronic conditions to tell their story of what being chronically beautiful meant to them.
As I was still trying to pull myself together, the day started rolling. Our first model showed up and the shoot began. Hair brushes and make up brushes were flying as photography equipment was set up. We rolled through the prep and shoot until we stopped to interview our first model and ask her about living with Cerebral Palsy.
“I’ve lived with Cerebral Palsy all my life,” she said.
When we asked what her symptoms were like, she said that she has none.
“I don’t have any symptoms, but I have to use this chair,” She said, referring to her wheelchair.
“People treat me well. They are usually willing to help me wherever I go. I work at the YMCA, and I get to help the kids all day. It’s great and people are very supportive.”
I exchanged a glance with Lydia, with the same look of surprise. This was entirely opposite from our battles with illness. I found her statement of having no symptoms and frequent help completely intriguing. If given the time, I could have talked to her all day, but the other models were arriving. The shoot must go on.
The day became a constant flurry of chatter and laughing. All the warm good vibes I had hoped to accomplish, in bringing these women together. What was different about the room, was this unspoken haze of empathy. No one complained of symptoms, or even discussed it for the most part. Just a quiet respect for each other, and the knowledge that we were all fighting conditions that had changed our lives.
The day was chipper and fun. As always, the amusing wardrobe issues surfaced. Having people’s noses tickled by makeup brushes kept us laughing too. This was only broken by the times in which we sat down to interview the women. We spoke about our lives openly. Many models gave stories I felt familiar with. Conditions that were not obvious and disbelieved by their doctors, their friends, and sometimes their families. When I hear someone else with a chronic condition express difficulty, it holds an entirely different weight than those words would have meant before I experienced chronic illness myself. I frequently wanted to hug the women speaking, because I knew how heavy and hard their experiences have been, that have lead them to where they are now. But I realised that they didn’t need my comfort to be strong and tell their story. These women are warriors.
As the interviews rolled on, Lydia and I occasionally looked down to pull the tears out of the edges of our eyes. It wasn’t how unfair the diseases and symptoms were. It was the stories of how people treat you and how you have to pull strength from deep inside yourself, to keep moving forward when it’s far easier to give up.
“I realised that they didn’t need my comfort to be strong and tell their story. These women are warriors.”
I could spend hours telling you about each of these amazing women. However, you will just have to wait for the calendar and footage. Leaving that day, I felt so humbled being around such beautiful people. These were some of the strongest women I’ve ever met. I thought, if this is only a few amazing women, I know there are a million other stories out there to be told. I encourage everyone to start telling their stories, to be honest that there is almost nothing about illness that is easy. This is especially why chronic illness awareness is necessary – to make others aware that they are not alone.
There are more than a few moments where you want to give up. The lows are things that people should never have to experience. It is each person’s ability to keep overcoming those times of extreme illness and hurt, and to continue to give and contribute to the world that I find to be the most amazing part. The objective is not only to inspire chronic illness awareness, but to push those who can relate. I hope people will buy these calendars so that they can look at it every day of the year, and be inspired to face the issues they are dealing with and find it in themselves to overcome them. This inner strength is Chronic Beauty.