Sharing My Story

After my previous blog, some people asked me to talk more about disclosing lupus with people around me.

It took me a couple of years to have the courage to open up about it. Confronting my own fears as a lupus warrior is one of my biggest challenges today.

As my condition worsened, I wondered how to communicate my new reality. The more I thought about it, the more I created stories in my mind. Pain, judgment, shame, lack of control and guilt started to burn inside me.

How would my lifestyle be from then on?

Thinking how about the potentially unwanted changes were hurtful, as well as stressful. After I was able to overcome the negative mental trap I created for myself, I started to assess what people really needed to know, because after all, my health is a private matter.

The same line of thought went to my social circle, and when I thought about my work colleagues I felt the tension growing. Would I lose my job? Would people treat me in a different way?

Bringing Lupus to the Surface

I quickly concluded that my beloved ones had to know, but how much information should I share?

I don’t want my young kids to be afraid nor concerned about my health. Therefore, I focused on the positive side, explaining I would be spending more at home with them, and as they were growing up, it was time to be more helpful and independent with house chores. It worked.

The chat with my hubby was specifically about emotional and day-to-day help. I asked him to reduce his activities, get more engaged in home chores, and spend more time with me.

My extended family lives overseas, so my approach was different from them. I shared my radical diet and lifestyle changed, due to lupus. I explained what lupus is and is not, pointing them to websites and books if they wanted to know more.

Getting Real

I am blessed to have a few great friends. For them, I asked for the special gift of time, which is good for my mental and body health. We started to plan monthly hangouts, with or without spouses and kids.

The workplace environment was a tricky one for me, as I have invested so much in my professional career. I knew I had to be open about it, so I planned a lot before sharing it.

When I approached my manager and peers, I considered the context of how each one of them was involved in my daily activities, the impact of my deliverables and adapted my history accordingly. I felt I had the responsibility to notify them, without overexposing myself.

I decided to talk to HR to learn more about my benefits, understand my options in terms of a flexible schedule, remote work, sick days, and long-term disability.

Shake it Off

I am still learning how not to be disappointed when people don’t understand what I am saying, or think I am making it up. The life lesson that I don’t have control of some of the things I used to, still hurts. It has been a process for me.

But, as my dad used to say, it’s important to be able to put my head on the pillow, and know I did the best I could. That’s what I am trying to do every single day.

What about you? Do you have any suggestions on how to share your life changes with the world around you?

I would love to hear from you!

Yours truly,

Hope

“What happens when people open their hearts? They get better.” – Haruki Murakami