I don’t know about you, but it is hard for me to talk about lupus with people around me. I feel weak when I have to say that there is something inside myself that can overpower my will.Read More
I have noticed that sharing my lupus challenges with others who walk the same path is much easier, though. There are more understanding, compassion and less judgment.
During the past few months, as my lupus worsens, I have been learning how to share my health condition with people I relate to. Different audiences, different ways.
It could be a neighbor who drops by unexpectedly, a coworker who is just curious about what is going on, my manager who questions what I can deliver or a family member who has unreal expectations about what I can do. No fun at all.
1 dollar a day
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 1 dollar budget. If you do too much, and overspend, 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. I then 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 be. But the next day I feel even more tired.”
My doctor’s answer:
“It’s because you have only 1 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 work. Different contexts and words, but the same message.
They all understand what a budget is, and all have used batteries and old phones.
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, but without seeing pity in people’s eyes.
I don’t want to feel shame, even when others cannot be understanding.
As I have mentioned in a previous blog back in February, 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!
So, how do you plan on sharing your condition?
3 thoughts on “Be Seen”
QUANDO A GENTE ” RACIONALIZA” O FATO, FICA MAIS SUAVE ADMINISTRAR…
Hope, you are such a great inspiration! My best friend has Lupus. You help me better understand her. : ) Please keep writing ♥♥♥
Thanks much Regina!! your friend is very lucky to have you as her best friend, and mostly someone who wants to learn more about lupus. The support from friends and family is super important to make us get better!