My Chronically Ill Diaries: Daily Challenges

Every day I have a significant choice to make: what clothes am I going to wear today? Millions of women face the same question each morning as well, albeit for different reasons. Unlike most people, the clothing I select depends less on my mood or the weather than on the dictates of my illness.

My decisions are based on the fact that I am chronically ill and as such, I deal with two unique factors when it comes to clothing: what is my mindset and how painful is my skin feeling that day?

My wardrobe choices are dictated by the difficulties of living with scleroderma, an autoimmune disease that harms your skin, muscles, as well as your hands, feet, and inner organs. It is a multi-faceted, difficult disease to live with. Much of my body is covered in paper-thin scar tissue. Because of this, my skin is fragile and often painful. I select fabrics and styles primarily based on comfort because it is a necessity for my life. I also want to try and dress in some sort of stylish way because I am still a woman who loves fashion.

Being ill has not erased who I am and the desire to embrace my life, but it has changed how I approach it.

As such, each morning I face a conundrum: how to dress and maintain a level of comfort while trying to have some semblance of panache. And all of this before I decide on what I can eat for breakfast because food is another challenge I contend with each day.

This is how a person who is ill starts their day: what choices do I make so I can function as easily as possible so I can get through this day?

I find it hard to believe that I have been doing this for more than forty years.

On the one hand, I am lucky that I am still here and able to make these choices for myself. On the other, try to imagine how so many of your decisions you make each day without thinking are things that someone like myself must give time and thought to navigate through life.

I have learned over the years that when you live with a chronic illness, you approach simple, daily tasks quite differently from others. You adjust your life as your illness dictates; sometimes without thinking much about it and others by having to overthink and anticipate all possible consequences.

If I do not select the softest fabric on a painful day, by late afternoon I know that I will be scratching my skin and in a great deal of pain. If I eat certain foods, I will endure hours of acid reflux. If I use certain types of soap, my skin will chap, and I will be in utter misery. Do I have gloves handy so I can get something out of the freezer, so my hands do not burn with the pain the cold causes me?

You get the idea.

Being chronically ill means your definition of “normal” is quite different from how other people live. I do not consider it better or worse; it simply is.

Whether it is how I sleep, eat, work, or dress, my illness dictates most aspects of my life. It complicates everything. Out of necessity, those of us who are living with an illness must pay attention to routine decisions to function. We must heed the demands of our bodies, whether we like it or not because when we do not do so, we pay a significant price.

I will admit, I am not always happy with this fact; I have not always wanted to listen to my body.

Some days I am over the whole panoply of issues that comes with being ill. From simple things such as I would like to once wear jeans that are not large in the waistband because my scar tissue bristles at the stiffness of the denim. Or the larger things such as what I eat on any given day. Many times, I want to eat that giant Caesar salad because it is my absolute favorite salad in the world, but I cannot as I am relegated to eating what I call the “soft food diet”. Even the name of the diet doesn’t that sound appealing, imagine eating that way.

Simple life tasks pose challenges for many of us with chronic illnesses. As I said earlier, it simply is how things are for us.

Whereas the physical complications of being ill require a great deal of planning and forethought, the mental adjustments are sometimes deeper and more difficult.

“Love the skin you’re in” was part of an advertising campaign for the Olay brand of skincare products. Well, for me that idea has taken decades to reconcile; how do I love my painful, disfigured skin? Can I love it? The answer is sometimes I simply cannot. On any given day I want to hide as much of it as I feel necessary, but I do my best not to.

Imagine that every day my inner dialogue is centered on both the physical as well as the mental. How strong do I feel today? Do I need to hide my scars from my illness or am I feeling brave? Can I face the world and its rude stares or am I too vulnerable in this moment to contend with it?

In my life, the simple act of wearing a sleeveless shirt is a deep decision, even when I am feeling strong. It is an act of courage and faith because I face a world that offers little grace to those of us who are “others”.

On the surface it may sound vain; after all, we are more than our appearance. This is true. Yet what I am debating internally is how much of myself do I want others to see on any given day? Am I in a place where I can brush people’s reactions on seeing my disfigurement aside or is it more comfortable to just hide who I really am?

Even after a lifetime of living with my illness, some days I just do not want the world to see me. While I am proud of my scars as they illustrate my strength and resilience, sometimes I have to do a lot of work to steel myself up to face the world.

I realize that I am a work in progress, and I have learned to accept this. And my acceptance has less to do with me, but my realization that I have a story to share and people to [hopefully] inspire.

Coming out publicly by writing about my illness is difficult for me, to say the least, but I feel it is time. Perhaps past time. By sharing our stories, my story, I hope to help others like me to see that the life they are living may be different than it was before, but it is still a life of value and dignity.

For those who are not ill, hopefully, a glimpse into our world can aid you in understanding your ill friend’s fatigue or preoccupations with seemingly routine matters is a necessity.

And for those who are ill, I need you to know that you are not alone. Whether you are living with scleroderma or another illness, your life matters. You matter, regardless of your challenges or scars.

And true confession: I still eat my beloved Caesar salads. I simply divide them into thirds and eat one-third per day until it is finished as I wear my super soft fashionable clothing. Because ill or not, I refuse to stop being myself. And neither should you.

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