How Lupus Changed Who I Thought I Would Be In My 20’s

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Currently, I am 26 years old, going to be 27 in just a few months. Unfortunately, since I can remember, I have never felt completely “normal,” but I can say 16 was probably the best I ever felt. Looking back now 10 years ago, I had a vision of what now might look like. I had this image that I would be the most beautiful I could ever be. I thought I’d be somewhat of an established adult with enough money to be on trend and rock these years like no other. I would be able to go from my awesome job, where I was super successful, and drive my really cool car on a Friday night with my friends. Maybe end up at a bar/restaurant where we should share a beer or glass of wine and laugh about our week. And if we became daring we would even get up to dance. We would stay out late and have the time of our lives. In this vision, I was stunning, wearing beautiful high heels, tanned with killer legs.

Well, let’s be real… my life hasn’t been anywhere near this. I think I had better Friday nights as a teenager or young adult than I do now! I have so many limits and insecurities that my once vision of what today would be like seems like a dream I can no longer achieve. As I am approaching 27, I feel like soon my what-could-have-been fun times are almost over, that my ship will soon be sailed. That “free” part of my life will no longer be there or acceptable.

When you’re chronically ill, you grow up fast! Too fast. I can say that because my autoimmune disease has brought me to my darkest days where I thought I would never see the light again. Fun in the sun is no longer an option as this sends me straight into flares. On Saturdays, I’m completely wiped out because of chemotherapy drugs.

I don’t have the energy to blow out or straighten my hair. Most days I barely put on makeup. Just the thought of wearing high-heeled shoes makes me laugh because I know how much it would hurt. Attempting to look like my vision would be pretty much exhausting and I would be so negative on my spoons I wouldn’t be able to enjoy it.

Of course, on social media all my friends or once acquaintances at my age are living the actual vision I had in my head for me. They are stunning, glowing and their legs are killing it. To be honest, it does hurt. I wonder if I’m going to live right past my “prime” and go straight into old age. I question and wonder if 16 was my “prime” and if I should just get over this petty feeling.

Sometimes I build up the courage and by the time I’m actually ready, I am so wiped out that all I want to do is crawl into bed. Heck, I went bowling for an hour and I was in serious pain for four days. Really? One hour is equivalent to four days of pain.

I know this might sound silly, but almost every Friday and Saturday evening I think about what I could or should be doing. But then I realize no, that’s not happening… I can’t even have a beer because of the darn gluten. Plus, my methotrexate doesn’t even allow me to drink. I tried to have a glass of wine once, and it did not go over well. The worst part about it is I actually liked wine, and the sparkling one too! But, I can’t.

The dancing and staying out late with friends would probably make people laugh if I ever suggested it because I am always so tired and in my pajamas. Just the thought of fun sometimes can be exhausting.

So here I am in my 20s, getting closer to the end of them. My doctor says I’m a 26-year-old living in a 50-year-old body. Some days we can raise that number up to 89. I’ve literally had older people walk past me because I can’t walk fast enough due to the agonizing pain. On Friday and Saturday nights you will 99 percent of the time find me at home. It’s not just a choice, it’s what my disease requires of me.

I know it may sound petty to some, but at one point in my life, the vision I had made me feel like when I grew up I was going to be “free.” I would be out of my parents’ house, out of college and have no attachments. Now I have so many rules and boundaries. My disease on most days makes me feel anything but “free.” I sit here and hope soon I will be able to have that “fun Friday night.” Because I know at 16 I was a wild one, and I can only imagine who I could have been now.

Previously published on https://themighty.com/2017/08/how-lupus-affects-you-in-your-20s/

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