Loved Ones Have Shared Their Fears of My Death with Me

I find it funny the things that people choose to say and the words they withhold from you. Those of us living with a chronic illness such as lupus often hear, “You don’t look sick.” What we wish they meant was, “You look really good in spite of what you’re battling.” Many of us hear, “There mustn’t be anything wrong with you because you look fine.” But when I speak to my loved ones they have a different perspective to mine.

As I lie here typing, my lungs are being a royal pain because of an infection that has rocked my body for a couple of weeks. Fortunately, my support system is strong. People I met while living in Thailand and other newer friends have traveled to spend time with me.

One friend was scheduled to leave today, but she has extended her stay because she felt I was not up to taking care of myself yet. Another friend arrived last week from Houston. They shared anecdotes about me including the stories of how we met. Listening to them and speaking with other friends have given me a new understanding of what someone means when they say, “You don’t look sick.” Perhaps I will embrace what I perceive to be the intention behind their remarks, that I look good in spite of the battle.

Almost every one of my close friends has related to me a specific situation when they thought that I looked so frail I was going to die. They usually share this with me afterward when I’ve begun to recover. I’ve asked, “What does sick look like?” Apparently, I have spent a lot of time looking so ill that those who love me were extremely worried for me.

In the beginning, before I had a diagnosis, my family members said goodbye to me in their own way. They all deny it now but I know them, and I realize that they are still concerned. I have a special family group. My dad scolds me if I don’t reach out to him once a week. He has asked me to call him if I’m not feeling well and to check in regularly regardless. I’m almost 50 years old, and he still fusses over me as if I’m a kid. But his concern shows me the love in his heart. My sister and my mom understand that I hate talking on the phone, but I know they still want to hear from me.

My friends have shared that when I look weak, they don’t tell me that because they want to be positive in their words and actions. I lie here with a full tummy because before my friend returned to her Airbnb, she made sure I ate something, that I had a tall glass of cold water next to me, and my dishes were washed. I feel special and loved. If I die, they’ll know that I love them and I’m sure too of their love. I realize that I’m not alone and that no matter how difficult it gets, I’ll do my best to keep fighting this disease. It’s not an easy battle as I’ve shared in previous columns, but I owe it to my loved ones not to give up because they haven’t given up on me.

***

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.