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Sharing My Story

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, I lived through this horror. I can take the next thing that comes along.” – Eleanor Roosevelt

 

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, judgement, shame, lack of control and guilt started to burn inside me.

How would my life style be from then on?

Thinking how about the potential 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.

I thought about this for my social circle.  Then, I thought about my work colleagues, and 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. As they were growing up, it was time for them to be more helpful and independent with house chores. It worked.

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

My extended family lives overseas, so my approach was different with them. I shared my new, radical diet, and how life-style 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 hang outs, with or without spouses and kids.

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

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 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 that 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?

 

Yours truly,

Hope

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

 

Hope was diagnosed with lupus in 2013. Since then, she decided to learn more about her condition, and explore ways to feel better. Before recently changing her life aspirations to focus on the lupus cause, she worked for several years in the technology industry, holding different engineering, marketing and leadership positions. She is Brazilian, and lived in the Silicon Valley and in the UK. Now, the lovely state of Oregon is her home.