Chapter One: Who I used to be…

I wasn’t always like this; exhausted, cranky, anxious, depressed, stressed out and pessimistic.

On the contrary, I am normally a very positive and upbeat person. I’ve been told my energy is palpable. I am definitely an extrovert, not shy, and I have always been the “life of the party”. Every time I plan an event, birthday, dinner, party, it has to be BIG. I am a Gemini, an extremist if you will – an all or nothing type of person. On good days, I like to believe that side of me still shows through. I also think I can still fake that part of me pretty well. It’s easy to fake things these days. I fake being “okay”, I fake being “not depressed”, I fake being chipper and peppy. It’s how I have to get through my days. No one wants to be around the negative nancy, and I get that. I truly do. I don’t even want to be around myself half the time.

Being in pain does this to you. It changes you. It robs you of your life. I say this because I want to spread awareness. Awareness to those who see me, but never actually “see me”, and awareness to those who probably feel the same way I do. Chronic pain is isolating but it’s also invisible. You can’t see that typing this article is killing my hands, just like you can’t see when I am out at a dinner with friends, my hips are aching with a pain so raw and deep that I can feel it in my bones.

Long gone are the days of staying out until 1am on a Thursday night, only to be up for work at 6am, running on 5 hours of sleep, a large iced coffee, and a #bossbit*h attitude. That is who I was (and frankly, not even this disease can take the girlboss out of me). But I was able to do it all. I was able to work all day, go out at night, maintain a healthy social life, date, go to the gym. I mean was I tired? Sure. But I was ABLE to do it.

My first job out of college I worked crazy hours, I mean 7am-8pm and that was the daily grind. I went on business trips where we were up at 7am, worked until 5pm, changed quickly, and would go to client dinners until 12am. Only to do it all over again for weeks on end. I was fierce. I was passionate. I was healthy and I could handle it. These days I am lucky if I can handle an 8am-7pm day remotely but I do it. Because like I said, I will not give up my dreams of being a #bossbabe. Not even this retched disease can take that from me. Even if I need to give up typing from 6pm on, so be it. I will make it work. I always do.

This disease doesn’t just rob your professional life, it robs your personal one too. I was the girl you would catch starting the congaline at a bar, or waking my friends up at 6am to start our vacation. Sleep was for the weak. Life was for living and boy did I live it. That is until I was 26.

I know what people think.. Rebecca missed an event again. She probably didn’t want to come. I bet she was “too tired”. Some probably even think I use my illness as an excuse. Perhaps, I am “lazy”, or “unmotivated”. But, people are wrong. These assumptions are just that, assumptions. Because you may be upset, but I think about this for hours, days and weeks. I beat myself up for missing events. I stay up at night wondering who I disappointed. I try and find ways to plan my days around events. I schedule in naps, and plan my pain medicine according.

I don’t share my journey for pity. I share it because I miss me. Lupus, and Rheumatoid Arthritis takes everything from you. All autoimmune diseases do. When you don’t see me at an event, remember who I was, and remember who I am today. I try to balance both but trust me, this disease hurts me more than it hurts you.

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