“You don’t look sick?” My ITP Story

Over the years, I have developed a very sarcastic shell that I use to for protection. Most of the time, I like to believe that kindness is my superpower, not my weakness. However, Sarcasm is my safety net. I have been diagnosed with ITP (Idiopathic Immune Thrombocytopenic Purpura), Chronic Migraines, Depression, & Anxiety. These do not by any means make me unique or special. I have learned over the years that there will always be someone who can top my list any given day of the week with a blink of an eye. These are however, invisible and incurable diseases that I will carry with me like badges sewn inside my jack lapel, that I can flash any time I need gain entry into the club. People have often said to me when the truth rises to surface, “You don’t look sick.” In the beginning, I would smile and say thanks. Now, I just smile and say with a slight laugh, “Why would I want to look sick?”

I like to do things for myself. I don’t want to be sick, much less look the part. I’m not a complainer. I don’t want to be around complainers or negative people, so why would I want to be one myself. I like think of myself as a person who looks at the glass half full. I don’t want to be on disability, either. I would rather tell you a joke and make you laugh than tell you how tired I really am. I would rather help you than have you help me.

It is always easy when I feel well. When I feel bad, the darkness creeps inside my mind and nothing seemed to matter. This was hardest, when I was in my twenties. I was alone and I battled with myself. I would crawl inside my bed and then into my mind. I had just finished graduate school and landed a job teaching. If I wanted to keep my job, I had to get out of bed and go to work. It was a great struggle. I was very ill, depressed, and alone. I never wanted to look sick and I never wanted anyone to know. I wanted to be strong, no matter how weak I felt. I hid inside myself. I am surprised I made it through, but I did.

In my thirties, I began to share my story with my family & friends. I had to have major surgery and I was scared. My family was angry that I didn’t tell them right away & scared, my friends didn’t seem to believe me. Or at least, I felt as though I had to convince everyone that I really was sick. It was such a confusing time. I didn’t understand enough to be able to talk about what was happening in my life, so I began to close myself up again. I didn’t want to be sick anyway, so why bother with family and friends who I felt were being difficult.

I was put on short-term disability and I felt lost. I was broken. I was 32, with no job, more bills than I could afford and angry at everyone. I have no clue why I felt like that was a great place to start, but I had to do something. I started learning about my invisible and incurable diseases. After three years of believing I was the only one Earth that had what I had, I began to learn that I was not alone. There were others like me. Doors began to open.

I’m 42 now. I’m married with a 5-year-old daughter. She is just like me. So yes, I am getting a full dose of my own medicine, especially on days when I am at my worst. She is in school now and unfortunately, I am on full disability. I don’t want people to know. I am afraid they will think I am broken in some way. I haven’t gotten a hold on that yet. My husband is my life partner. He is my rock. I am learning how to ask him and others for help when I am in need. It is not easy. I still don’t want to be sick or look like I am sick, but I am finding a better balance in life. I am doing a better job (most days) not to beat myself up for things I cannot control. I take time to love myself more. I learned to do this by treating myself like I would treat a friend. It is never easy, but I don’t want a free pass. I’ve never minded a challenge. I know in my soul, I can do this even when I don’t want too.

A very wise person once told me, even though the list may be long, if a one accomplishes three things each day, then they are still moving forward in a positive way. I have come to embrace this theory with open arms. On a good day, I may go to the grocery store, cook supper, and do laundry. On a not so good day, I may wake up, pee, and go back to bed. It doesn't matter what those three things are, I am still moving forward.

Kindness is my superpower and it is not my weakness. Good hearted sarcasm is my safety net. May you travel safely and love unconditionally. Love, Light, and Laughter my friends. Namaste.

- PK Scott

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