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Why I Now Speak Candidly About My Chronic Illness

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For years after I was diagnosed with my first chronic illness, only a small handful of people knew I was struggling. Although I was only 17 years old and understandably more shy about being in any kind of spotlight, I also felt like there was this strange stigma attached to what I was going through. I thought it was more polite and socially acceptable to stifle what I was feeling, both physically and emotionally. Be it for acceptance amongst friends and peers, or a reason not to stand out, I shunned my illness and made it seem like it was a very small part of my very big life. I refused to let it define me and instead filled my time with keeping busy and looking as “normal” as possible to those around me. I successfully kept it under wraps like this for years.

Fast forward to 2015. I’m 34 years old, one year into a new serious relationship, and one year into a new job – which came with a nice promotion. If I shied away from talking about my struggles in the past, you better believe I wasn’t about to jeopardize two new things in my life that were extremely important to me now. I could not let chronic pain and discomfort make me less attractive or desirable to both my partner or my employers. I had to bite my tongue when I was hurting, take some extra Advil, keep a heating pad in my car for emergencies, and keep my doctor on speed dial. I simply had to keep my issues anonymous, because who could ever love or want a sick girl?

The constant internal and quiet struggle I was inflicting on myself was starting to take a toll. In mid 2015 my symptoms starting to gang up on me. It’s like they refused to lay dormant and demanded I pay attention. No amount of rest, exercise or medication could make up for denying and ignoring what my body was trying to tell me. I ended up in the ER more times than I can count, had surgery, cancelled plans with friends more than I wanted to, and felt myself losing grip on what I thought I was so successfully able to control. It was becoming more and more difficult for me to refuse admittance of what was ailing me. Maybe I had to be more open about my illnesses and how they were inevitably affecting my day-to-day life and my relationships with friends and family. But still, I remained mostly quiet and chose to live a life of silent pain as that was what I thought others needed from me. Only those closest to me knew even the smallest details; I only allowed them to know as much as I was willing to divulge.

Years went by. I went through bouts of flares followed by a long-term remission in 2016 and 2017. I reconnected with a lot of old friends, made some new friends, partied as much as possible, worked long hours, traveled a lot and spent most of last year planning my wedding. I thought I was curing myself by taking on as much as I could possibly handle. And now because I was feeling better I really didn’t ever have to talk about these skeletons in my closet ever again, did I?! Hooray! This must be karma. This must be justice for my years of pain. I felt like a completely new person. But with chronic illness, you can never get ahead of yourself. You just can’t ever be sure what’s around the corner.

After a busy 2017, this new year came and went and I was finally starting to slow down. In mid-February the pain and discomfort started to return. Along with the physical symptoms, stress was starting to manifest itself by way of almost constant anxiety and paranoia. I was a newlywed; I didn’t want anyone to think my marriage was struggling – I had to appear happy at all times or someone might become suspicious! Although I had consistently been producing strong results at work I couldn’t let anyone think I was going to slip up and get lazy; I was known for my work ethic! It would be impossible to break plans with my friends like I did years ago because they would never see me as fun or carefree ever again. This ever-present state of fear about being candidly myself, slowing down and owning all my physical limitations was only having a negative effect on me physically; how’s that for irony?

And so, a few weeks ago I made a bold decision. I would not hide this part of my life anymore. I would be open and honest with everyone around me about exactly what I was going through, even if they might not completely understand or even be able to pronounce my illnesses. I’d be unafraid to say words that used to make me cringe to think about saying out loud. (Period, gynecologist, urination, cramps, vagina. Gasp!) I see a therapist weekly and practice yoga regularly again. I have an open dialogue with my colleagues and employers about the things I need in my workplace to keep me healthy. If I have to cancel plans with friends, I’m honest about why.

Unsurprisingly, the support, encouragement, and understanding from my loved ones and colleagues has greatly improved my quality of life. I feel OK to be 100 percent me; to pull the curtain back and admit that I feel like crap sometimes and I’m not always in the mood to be strong. I still refuse to allow myself to be seen as the sick girl, but I’m OK with the fact that everyone knows I’m not ashamed of it. This self-acceptance and forgiveness is starting to make me feel like me again. My symptoms, although always there, are staying quiet because I’m not staying quiet. I feel grateful and hopeful and like a fierce badass for once in my life. It’s OK to be who you are, whether that’s the girl on her yoga mat or the girl on her couch. Sometimes it’s incredibly liberating to be totally transparent.

Getty Image by  _chupacabra_

Originally published: May 11, 2018
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