Lupus Is Not an Award, but I’ll Accept It

Three years ago, I embarked on a journey of knowledge and hard work that has taken me around the world. It changed my life, and I’d like to thank the academy and accept this award … wait, wait, wait!

Lupus is not an award. It’s not the result of hard work or some honed craft, and I don’t want to get dressed up to accept it. Some days, I don’t even want to get dressed! However, there comes a time when reality comes right up and slaps you across the face, while sneering, “Deal with it.”

I’ve shared the stages of grief before, but even though I knew what they are, I still had some misconceptions while experiencing them. For one, I thought they followed a timeline. You have denial for three months, feelings of anger for perhaps four months, and so on. It has been over three years since my diagnosis, and for the first time, I realize that I have spent nearly every moment in denial.

I accepted that the word “lupus” was associated with me. I accepted that it would always be a part of my life, but I was going into remission. I was going to be “normal.” When events triggered a long spell of illness, I would rebel against it. I have been openly sharing my battle for three years here at Lupus News Today (this is my anniversary month), yet the entire time, I have not truly accepted that I have lupus!

I look at lupus as if it were a body-shamer. I hear it saying, “Your legs were once photographed by a professional photographer. Now, they look like sticks.” I have to accept that.

I look at lupus as the cruel prankster who puts tacks on chairs. My “tack” is a chronic cough that sounds as if I have a three-pack-a-day smoking habit, though I’ve never smoked a day in my life. I have to accept that.

I look at lupus as someone who loves to insult others and make them feel bad: “You can’t work. You’re useless. You have no purpose. Why does anyone need you around?” This is how depression works. I have to accept this.

Lupus is not something anyone would walk willingly or openly into. I have fought for three years and been in denial for three years.

Now that we’ve dealt with why I have refused to accept the fact that I have lupus, let’s talk about why I am now open to acceptance. Denial is hurting me mentally, and that means I am giving in to lupus in ways I never anticipated. Denial also keeps me from doing things I should. When I think symptoms are minor and will improve, I don’t go see the doctor, although I know I should. Often, it’s due to fear of another hospitalization, which would deepen my depressive thoughts.

I’ve sought the help of a professional therapist to cope with changes in my life. I know deep down inside that the things I feel about my illness are really insecurities I have about myself. The world around me doesn’t know about the change in my legs. People who know me know that my cough is not from smoking, and I owe no explanation to strangers.

Even if my sole purpose in life is to write this column, I am helping myself and others, so I have a purpose. The negativity I feel is about my ego, and we all deal with that. My ego and I have to fight it out. While I will not be accepting my lupus happily, like an Academy Award, I will be accepting it because, like it or not, it’s not going anywhere.

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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.