LiveLoveLaughRA

Posts Tagged ‘Chronic Illness

Cover of "40 Days to Personal Revolution:...

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I am on Week 3 of the 40 Days to Personal Revolution by Baron Baptiste. Last week we had to write “our story”  You know, the one that keeps playing in your head, maybe its good, maybe its bad…

At first I, like many of my group-mates, were opposed to this and terrified. But we completed this task and shared it with our buddies. I decided to share my story here. It’s not complete, but for the most part explains my current thought process and ways of living today.

“I have never been a healthy person. From the outside I don’t look sick but on the inside I have been fighting a chronic illness since birth. I have been fighting my whole life to keep up with my outside; that I don’t look sick. Throughout elementary school and high school my parents fought the Board of Ed in order for me to have accommodations that I needed such as having a second set of books at my home so I didn’t have to carry them all on my back; extra time passing in the hallways between classes so I could use the elevator if needed or take extra time on the stairs because I couldn’t keep up with my peers fast pace, and being allowed extra time to take written exams so I could rest my hands between questions. All of that while I tried my best not to look or act sick in front of my friends, teachers and classmates. I would rush to get to class to pull out my in-class books so my classmates wouldn’t see me getting it out. Whenever I was questioned about it by them I would either ignore the questions or make up something about forgetting my book in my locker. I did whatever I could to hide my illness and keep up the best I could with my friends so no one knew or even had a chance to question me.

I hated to admit I ever needed help and did everything I could not to ask for help and not complain or make myself look like I was different. I made it through undergrad without any special accommodations or even registering with the disabilities office at my college. I didn’t let my roommates or classmates even know there was something wrong with me all while going home once a week for my mom to inject me with medication that allowed me to function. A few close friends knew but I rarely mentioned it and did everything I could to keep up that it was never acknowledged. After dating my now fiancé for a few months, I finally let him know. He didn’t seem to be phased by the news but I’m not sure he quite understood what it meant either. 

It’s not until we lived together in a different state did he really realize the impact RA has on my everyday life. I saw me on good days and bad days and got to see first hand sitting in a chair in the hospital getting pumped full of medicine or injecting myself in our bathroom. My needing to take time off from work for doctor’s appointments left my close-knit co-workers to wonder. I finally disclosed my fight with RA to a select few after ending up in tears because a city employee called my supervisor to question why I was always so stiff and not bubbly and energetic like my fellow co-workers. It finally hit me that I am getting older and the odds of my good days out-numbering my bad days are slowly coming to an end. I had always ruled out having children of my own, and as a girl in her young 20’s I wasn’t even really concerned about it. Now I am in my later 20’s, getting married and wanting a child of my own.

I made myself into an independent person so much so that it was actually destructive at times. I pretty much fought this battle in private, dieting and exercising on my own, pushing thru pain and swelling and trying to complete my tasks at home and work with out questions and going to different doctor’s appointments without letting many people know. I hated to have to ask for help from anyone other that my immediate family. I started to become more verbal about my illness and let people know when I wasn’t feeling well. I actually found that I needed to educate people on this illness because it is not the commonly known osteoarthritis and young people do get this disease.

I knew staying active was one of the most important ways to combat this illness and looked to yoga after finding myself paying a $30 co-pay for physical therapy services that left me in the corner of some big room doing variations of cat and cow pose. I was surprisingly happy with the yoga sessions and didn’t have to hide anything. I could have RA and still keep up, using any variations needed. I had to problem grabbing a block (or two), a blanket for support or strap for extra help. I never once felt inadequate or like I was so much worse than any other student practicing with me. 

I am learning how to balance my pride and independence that I forced myself into so many years ago and accept that I do need help sometimes and it is not a bad thing to ask for it.”


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