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When It Feels Like You're on the 'Sidelines' of Life as You Battle an Illness

If you were to look at me from the outside you would see someone who is fairly happy-go-lucky and doesn’t really let life get her down. You would see a vibrant, seemingly healthy woman, who just graduated college after working so very hard and putting herself through school. You would see a woman who loves to encourage others, loves her family, and also found her passion in teaching, and has a multitude of opportunities in front of her.

Yet, if you look close enough, you would see the struggles of someone who truly is a warrior and a fighter. I have been fighting for answers and fighting to just manage my life on a day-to-day basis. The years that were supposed to be my prime years, I spent questioning myself and questioning why I never truly felt “healthy.” After years and years of various hospitals stays, random doctors, tons of medication, missed diagnosis and wrong diagnosis, I was finally able to come full circle, and God put the right people in my path that helped me deal with my illness, and put all of these puzzle pieces together.

Reflecting, I sit here and ponder the question in my mind about what is the hardest thing about living with a chronic illness? Well, in my case, where I have lupus and multiple other related immune diseases, I would have to respond that it’s the way I feel about myself, in the sense that it has put my life on hold, and there were missed opportunities I lost as I was battling my own body trying to get answers. I was forced to sit back and watch friends and family start their own careers and families of their own. It was hard for me to sit back and realize I had bigger shoes to fill before I could embark on some of the things that were truly on my heart, and were considered “normal” for someone to experience in their 20s.

Yet, as contradictory as it may sound, I feel blessed to have had this opportunity to view my life from a perspective that most of my friends and family did not get the opportunity to. My immune diseases allowed me to pull out an inner strength that most people don’t ever get to tap into. There were so many times I wondered if my health issues were “all in my head,” or if I could just push through and force myself to live the life I wanted, that I would be fine and get over the health issues, not think about them, and get to enjoy life as a normal woman in her 20s. There were so many times I was extremely sick, and I would sit back and just cry over the lost job opportunities, missed class time, dropped classes, and even friends and family I lost in general.

You as a person are not meant to adjust to that type of emotional pain. Yet, it’s OK to feel and acknowledge all of it, because the more you ignore your disease the weaker your body gets. You have to learn to embrace it, and take notice, that way you can take the best care of yourself as possible in order to go and achieve the life and dreams that are on your heart.

As I sit here and write this, I am unable to go outdoors due to severe sunlight reactions. I also recently had to leave my teaching job due to uncontrolled chronic illnesses. Did it get me down? Yes. Do I sometimes feel jaded or envious of others as they post pictures of their children, and the wonderful things they get to do outside? I would be lying to you if I said it didn’t bother me. Yet, as I sit here, I realize I have been allowed to see life from a perspective that most never will get to. When all of the things that distract you from your heart or bring you temporary joy are taken from you, it truly allows you to focus on what is deeply within your heart and you grow so much more as a person, and see life in a totally different way. You don’t take those small moments for granted anymore, and the little things that I see people stressing over, seem very insignificant from my perspective. I relish the time I get to go outdoors, even if it is with sunscreen, or just at night. I enjoy the few hours I get pain-free, as well as the fleeting moments where I find breakthroughs with my illnesses.

It is very hard for someone who is not standing on the sidelines to truly understand empathetically what you are going through until it truly happens to them, because the reality is, when you have a chronic illness, the chronic illness comes first, and whatever else is on your heart will come second. This was very hard for someone as stubborn as me to accept, but I think people in general are made to feel that you can will yourself to put what’s in your heart first, yet that isn’t the case when battling a chronic illness. “Do not measure your success by what you have or have not achieved, measure your success by what you have overcome!”

So, I want to offer these words of support to others that feel the pain of being on the sidelines as they battle a chronic illness. It’s OK to feel sorry for yourself. It’s OK to feel like you have missed opportunities. However, relish in the fact that you are able to look at life from a perspective most will never have the opportunity to receive. Once you accept the fact that you have a chronic illness and there are “seasons” to your life when it can seemingly control your life, and other “seasons” where you feel like you are able to reach for the stars, then, in a sense, you have created the best opportunity there is for your heart and for your own physical healing and fighting: hope.