Why I Hope Talking About My Chronic Illness Unsettles You

I understand not everyone is comfortable about talking about his or her life with chronic illness, but I am, and if I make you uncomfortable I’ve achieved what I set out to do. That is my intent.

If something is close to your heart and you’ve got a voice, I believe you should be daring enough to use it.

I am aware that being completely open about a life with lupus is not everybody’s cup of tea, however, in my case it is —and I’ll have the whole teapot, thank-you!

Chronic illness is still very new to me, but as it has become an inevitable and unchangeable part of my life, it’s something about which I’m incredibly passionate. It has been hugely eye-opening to me that so many people live with invisible illnesses and that there is such a lack of awareness among the general population.

I admit that before being diagnosed I, too, had very little knowledge about general chronic illness. However, being previously unaware only fuels my desire to promote awareness and alleviate the stigma that surrounds both lupus and chronic illness.

Every week I put together at least two columns related to my life with lupus, and I am passionate about this for a couple of reasons:

1. Writing is a form of self-expression and an outlet that continues to aid me in working through and understanding various parts of my new life with lupus.
2. I want to start a conversation. I’m writing in the hope that you read something, connect and resonate with it, and share with someone close who might not understand what you’re going through or have been through.

As I wrote in a column a couple of weeks ago, I got a tattoo of a wolf, in large part to act as an ice-breaker for discussion. Even in the one month that I’ve had it, it’s done just that a half-dozen times.

The thing I notice most often about someone who’s asked about my ink? Their immediate look of discomfort and sympathy.

I don’t want the sympathy, but I’m not sorry that they feel uncomfortable. I want them to feel unsettled while we discuss something that’s considered taboo, I need them to accept it and push past it.

Worldwide, there are millions of people who live with chronic illness in one form or another, but the stigma still remains.

Some would say that I have a way with words, while others say that I just express myself well. My parents would suggest that I just talk way too much. But whichever it is, I have something to say to the world and I’m going to share it; regardless if it’s ready to hear my truth or not.

The truth is life is hard, and though it’s not completely obvious, some of us live a life where the battle is not solely external.

I’m not going to spend my existence tip-toeing around the fact that a part of my life revolves around lupus. I’m aware my situation with lupus most likely would be considered fairly easy or “lucky,” yet I still face challenges every week.

My parents have raised me to stand up and fight for what I believe in, to not accept the way things are and to be apart of the change I want to see on this big, crazy planet, and I’m doing just that.

I had no more control over my lupus than someone who was diagnosed with diabetes at birth. Yet, diabetes is openly talked about and I’m expected to hold my tongue.

I have something to say and, whether society considers it socially acceptable or not, I want to share it with you.

I want you to help me and you won’t have to lift a finger. I’m asking you to help normalize something that millions of us don’t have any control over. I’m asking you for what every single person wants – to feel like we belong in this big, bad world.

I know it may make you uneasy, and I don’t mind if you’re at a loss for words, but I’m asking for a few minutes of your time to read my columns. I need you to listen to what I have to say.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.