Invisible illness

I struggle with one main thing when it comes to my heart problem. That is wether to tell people right away when I meet them or to hold off until it becomes “necessary.” I have struggled with that my whole life, especially my adult life. So far I have stuck to the plan and mindset that I will only disclose it if it becomes necessary so people will not look at me or treat me differently and to be honest that has come back to bite me quite a few times. I also struggle with the situation that if I do tell them right away I feel like I have to act “sick” or they will not believe me. The reality with an invisible illness is that you will not look or feel sick most of the time. But it can and will hit you out of nowhere every once in a while. It is hard for me to balance on that line of being “normal” me and being “sick” me so that people will believe me and take me seriously. I fear that people will think I am saying I have this illness for attention. I fear that calling it an illness will make people see me as fragile or less than I am. In truth I am a very strong person as are so many people who have illnesses wether visible or not. I didn’t even like acknowledging my heart problem as an illness until this year. I am trying to get better at putting it out in the open no matter what I think the reaction or outcome will be. Because I have learned it is important for my health.

When you spend your whole life distancing yourself from your chronic illness whatever it might be turning around to face and embrace it is extremely hard. You have to face realities that are the exact reasons you have been avoiding it. You have to embrace the fact that people will look at you a certain way. They will for a time think that you are incapable of certain things wether it is true or not. But at the end of the day it doesn’t matter what other people are thinking about you even though it is so hard to ignore. I am going through so many emotions. Fear, anxiety, stress, relief and so many more. I am trying my best to embrace my illness and the reality of what it means. No, I am not dying…not in the sense that I will be gone sooner than anyone else. But I have a lot to deal with things that no one around me has really ever known. Mostly because I didn’t tell them. All of us as people no matter our health status have so much to deal with in life. With an illness of any kind wether it be visible or invisible it will add another layer of hardships. Mental, physical, and emotional.

At times I feel like there are two versions of Kaylie. One that is “normal” that is capable of whatever she wants whenever she wants without any worries beside enjoying life. Then there is the Kaylie with Hypo Plastic Left Heart Syndrome. The one who goes to the doctor, takes medicine, has medical bills and is a heart patient. The one who seems to have so much more to consider when making any kind of decision. In my mind they are not the same person…that is something I just recently realized. I have realized that all my life I have been both versions at different times. When at the doctors office I would change into the, what I consider the fake version of me, which is “Sick Kaylie” and when I left and went back to my life I would change back into “Normal Kaylie.” The version that truly feels like me. I recently told my Mom this while we were waiting at my cardiologist office. She was surprised. I understand why she was surprised because like I said before I don’t tell anyone these things, including my family.

I don’t want to keep the versions of me separate anymore. I want to be just one version. The process of combining them is confusing. I am struggling because I don’t want to be too much of either version. I have lived in fear and dread of becoming fully “Sick Kaylie” so in response I have been “Normal Kaylie” most of my life. I have fought so hard against the version of me that has a heart problem that I don’t really even know what she looks like. I guess I have to figure that out. How do I become “Kaylie?” The one who is “normal” but also acknowledges her invisible illness. The one that embraces her congenital heart defect but does not let it control her. The one who loves writing and fashion and also takes the time to take care of herself and her heart. The one that considers her heart defect but does not let it make her fear going for what she wants.