How I'm Managing Society's Expectations As Someone With a Chronic Illness

Imagine you are someone who has a chronic, debilitating life-changing Illness. How hard it would be to check all of those boxes? Why is it we can’t ever give ourselves a pass when it comes to expectations from society? Why is it so important for us as people to “look the part” and to fit into the model of what we are expected to be and how we are expected to act? When do we, as unique human beings lose our individuality?

When I was sick growing up, I went to the doctor told him my symptoms. I was given a prescription and in a matter of a week or two was cured! Unfortunately, chronic illness especially autoimmune illnesses, like in my case have no quick and easy fix. As a young adult in today’s world, living with a rare, chronic autoimmune disease and seeking medical treatment isn’t so easy. Honestly, living and accomplishing daily tasks in life is a struggle. There is so much pressure nowadays to be successful, healthy, and take care of yourself. If you do not look a certain way or have a great paying job, or go to the gym regularly, you can be perceived as lazy and unsuccessful, which is pretty harsh. Now tack on the pressure of trying to keep yourself alive and help your body fight an illness you have no idea how you got and are completely clueless on how or what to do to make it go away. The weight of that can drown you.

It took me a very long time to be able to say, “I love myself” and I am “comfortable in my own skin.” After being diagnosed, I started to notice some pretty significant changes to my appearance. My lips thinned out tremendously, my skin became tight, shiny and hard, I also started to get these red blotches all over my face, neck, upper arms, back and upper legs that would not go away. In a nutshell, I looked completely different post diagnosis than I did less than a year prior to being diagnosed. As a young girl and teenager, I struggled with my appearance, so this made it even more difficult. I was an overweight child and up until I was a freshman in high school was pretty heavy. I was teased as a kid for my weight and appearance. Learning to accept the way I looked wasn’t easy, but as I grew out of my awkward phase of childhood into becoming a young woman, I started to slim down and really come into my own. Still, I was not 100% in love with my appearance. So you can imagine how devastated I was at the young age of 19 to find out I had this illness, but also that my entire body inside and out was now changing, and I had no control over it. There were times when I saw students I I graduated with and they would not even recognize who I was! It was so hurtful and overwhelming to me. Even to this day, things like this happen to me, but I found I  deal with these types of situations in a better way than I did so many years ago.

First, I really had to find my inner strength. I had to dig deep within myself and recognize that I was worth something. I was beautiful no matter what my face, skin or fingers looked like. Now don’t get me wrong — that took some time. I didn’t just wake up one day and fall in love with my ever-changing body and illness. However, I refused to allow my illness to stop me from living my life the way I wanted. Yes, I still do have setbacks and some things I used to be able to do, I no longer can because of health reasons. Still, in spite of it all, my illness has helped me grow, and learn to accept not only my differences and my disabilities, but others as well.

Secondly, I took my hurt, fears, and experiences and shared them with as many other chronic illness patients as I could. I chose to tell my story and advocate to other people like me who really needed someone to listen to them and someone who could relate. Educating others helped me to feel whole again in my own life, like there was a purpose for why fate handed me this awful disease.

Lastly, I chose to live! I chose me. I eventually accepted my illness was not going to go away. I started to live each day with a new purpose and a brand new outlook on life. I had a new appreciation for the “small things.” I knew my time on this earth was limited, and I didn’t want to waste that precious time feeling sorry for myself and my situation. I wanted to enjoy my life, try new things, be around people I loved and who loved me, and appreciate the beauty that was all around me. In my opinion, there are not enough people on this earth living each day to the fullest.

Society is so caught up on the superficial, they are missing out on the most important things in this world. So, my advice to anyone who is fighting an invisible illness on a daily basis, actually my advice to everyone – sick or healthy, old or young, rich or poor, skinny or fabulously full-figured: if you’re not doing everything possible to enjoy the life, and the body you were so freely given, then you might need to stop and re-evaluate your situation.

You only get one go around on this earth. So, please allow yourself the time and the energy to live. To breathe in the crisp winter air, to feel the hot sun on you face, to run your fingers through the sand and dance in the rain. Give yourself the permission to experience your life as if each day could be your last. It will change you.

I think if we all can try to live each day a little less selfishly and a little more selflessly, we as a society can change the game. We can make love, peace, beauty and kindness the new “norm,” and everyone could definitely use a little more of that in the world, don’t you think?

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