It has been 12 years since I was diagnosed with rheumatoid arthritis (RA) and fibromyalgia. It is has been a long road. Some days, I am hopeful and other days, I just want to give up. Mostly, I am over it all.
I am over the fact that most of my days are consumed by pain and fatigue and the days where I feel as if I’ve hit rock bottom. I am tired of planning to avoid flares, watching my diet, having my personal medicine cabinet pharmacy, the guilt, endless doctor visits, and not having carefree days. And when I feel good, I am always waiting for the other shoe to drop. It is all so exhausting especially for someone who seeks control over every aspect of her life.
I Don’t Have My Act Together, I Just Think I Do
Chronic illness has changed me and my life. I used to be a planner and a doer but mostly, a control freak. In some ways, I still am. I try to handle setbacks head-on by trying to remain positive, pushing forward, and continually looking for balance. But sometimes, the more I push, the harder it gets.
I confess I can’t control everything, and that experience often frustrates and angers me. Moreover, I know that my expectations of myself should be different than before I got sick, but my actions reflect a life-long attitude about how I face challenges. I try to convince myself and others that I have my act together, and sometimes, I actually believe I do. But the truth is, I don’t.
Here are 9 more confessions of this chronically ill control freak:
- Most days, my optimism is false. I don’t want anyone to see how helpless and hopeless I feel. And even though I have people around me, I feel discouraged and alone as I struggle with symptoms, pain, and a variety of emotions.
- I am angry at others for not taking care of themselves. I took care of myself and I still got sick. I feel like my body failed me and let me down. When I see others, eating unhealthily, drinking heavily, not moving, and making other bad health choices, it angers me and makes me question the unfairness of it all.
- At least once a week, I blame myself for getting sick. Maybe, if I ate better, ran more, stressed less, or cut myself some slack, this wouldn’t have happened to me. This contradicts my last confession, but I have always been a self-blamer. It is just part of my need to control my life, so I take the blame for my getting sick even though, it was out of my hands.
- I fantasize that, one day, it will be better. After all these years, I still want to believe I will be cured and that this experience will one day be part of my past. Granted, I know there are no cures for RA or fibromyalgia and I can’t change what has happened over the past 12 years, but I get to choose how to respond even that means being unrealistic, but hopeful, sometimes.
- Sometimes, I think I deserve this. I have made mistakes, wronged others, or maybe I wasn’t religious enough. Maybe, this is my punishment for not being a good person sooner. I know none of these things are true but sometimes, my frustrations lead me to believe they are.
- I am afraid. I have educated myself about my illnesses and don’t see remission in my future. I will never return to perfect health. I worry that I might get extremely sick and not be able to support and take care of my children. I know I cannot live in fear so, I focus on the here and now and make the best of my life despite illness.
- I worry I may never find a soul mate. I was a faithful and loving spouse, but my spouse wasn’t. As a result, my marriage ended and while that had nothing to do with chronic illness, it happened after I was diagnosed and makes me second guess myself and ever finding love again.
- Life is Unfair. On my good days, I feel unstoppable. On my bad days, I just feel depressed, and as if the universe wants me to suffer. But I do know that we all have struggles and the only option available is to control what we can and not dwell on the things we don’t have any power over.
- I don’t want people to feel sorry for me. I just want them to understand that I’m not always happy. That, I live a hard life sometimes. And sometimes, I struggle more than they can imagine.
This journey thus far has been one of many lessons. But I think that despite everything this control freak has been through and worries about, I know of at least one thing is true.
I am chronically ill. It is not my fault I got sick and it wasn’t something I expected or choose for my life. Despite the challenges, I know my life is still good; it just happens to be different than it used to be and what I imagined it to be. While I struggle with the lack of control over my life, I accept this and do my best every single day to have a good quality of life.
Originally written for Upwell Being.
Writing Portfolio by Lana 