I don’t know about you, but it is hard for me to talk about lupus with people around me. I feel weak every time I have to say that there is something inside myself that overpowers my will.
I have noticed, though, that it is much easier to share my lupus challenges with others who walk the same path is I do. There is more understanding, compassion and less judgement.
During the past few months, as my lupus worsens, I am learning how to self-advocate, to share my health condition with people. Different audiences, different ways.
It could be a neighbor who drops by uninvited, a coworker who is just curious about what is going on, my manager who questions what I can commit to, or a family member who has unreal expectations about what I can do. No fun at all.
One Dollar a Day
“Understanding the difference between healthy striving and perfectionism is critical to laying down the shield and picking up your life. Research shows that perfectionism hampers success. In fact, it’s often the path to depression, anxiety, addiction, and life paralysis.”
― Brené Brown
With lupus, my body is not the same. Life gets messy sometimes which is uncomfortable for me. I am neither as strong nor able to multitask as I used to. I get frustrated, anxious, and angry at myself sometimes, feeling I am not as effective as I used to be.
When I shared these thoughts with my new rheumatologist, she gave me the best explanation I have ever been given, which I plan on using with others:
“Imagine you have a dollar a day to spend. Every time you do an activity, such as driving your kids, running errands, doing laundry, solving a stressful situation at home or at work, you are using part of your daily one-dollar budget. If you do too much, and over spend, you will be in debt the next day … and sometimes, the next few days. So, pay attention to how much each activity costs to your body, and learn to balance each day.”
WOW! I have met so many doctors, read so many books, but no one ever gave me a description as good as this one. But I was still not satisfied. So, I asked her another question:
“The past couple of years, I have woken up feeling only 50% recharged. I feel like an old phone with a semi-dead battery. That said, there are a few good days, when I can bear anything and feel like I used to. But the next day I feel even more tired.”
My doctor’s answer:
“It’s because you have only one dollar a day, no matter how good you feel or how much battery you have.”
Be Real and Be Seen
Well, that was enlightening. I plan to use my doctor’s metaphor when sharing my condition with friends, family, and at work. Different contexts and words, but the same message.
They all understand what a budget is, and all have used old phones with weak batteries.
Defining boundaries to myself and to others is a nice way to explain how I feel, without having to give too much explanation about all the details about lupus. I want to feel better, respected, and happier about myself, and without there being the look of “I’m sorry” in people’s eyes.
I don’t want to feel shame, even when others cannot be compassionate.
As I have mentioned in a previous blog, educating the community around us on the impact of lupus in one’s life is critical for our mental and physical health. That improves our quality of life!
Advocacy is sharing. So, how do you plan on sharing your condition?
“When we fail to set boundaries and hold people accountable, we feel used and mistreated. This is why we sometimes attack who they are, which is far more hurtful than addressing a behavior or a choice.” ― Brené Brown, The Gifts of Imperfection
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.