Be Seen – II
I don’t know about you, but it is still hard for me to talk about lupus with people around me. I feel exposed when I have to say that there is something inside myself that can overpower my will and have control over my body.
I decided to review and repost the blog Be Seen, as nearly one year after I wrote how I felt when becoming vulnerable.
Lupus has no identifiable face and is hardly recognizable by the non-expert eyes.
I have noticed that sharing my lupus challenges with others who walk the same path is getting easier, though. There are more understanding, compassion and less judgment.
The group of people I have met at Instagram and Facebook who face lupus as a warrior created a great network for mutual support, inspiration, and hope.
During the past few weeks, as my lupus worsens, I have been learning how to deal with it and accepting the need to go back to Prednisone and Celebrex on top of Benlysta. Different times, different ways.
1 dollar a day, or 1 spoon a day
With lupus, life still gets messy even when I am doing everything right. This is uncomfortable for me. My memory is not the same, as well as my energy level. I get frustrated as I cannot multitask and angry at myself when the day ends with not so much getting done.
When I shared these thoughts with my new rheumatologist one year ago, 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. or maybe, we lupies have a teaspoon a day instead of a full serving.
Defining boundaries to myself is still a daily challenge for me. Nevertheless, this comparison is a nice way to explain how I feel, without having to give too much explanation about all the details about lupus.
I don’t want to feel shame, even when others cannot be understanding.
As I have mentioned in a previous blog back in February 2019, educating the community around us on the impact of lupus on 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? Are you planning to join the PDX lupus walk in September?
2 thoughts on “Be Seen – II”
Greetings Hope 🙂 , totally agree that your rheumatologist had the best words of wisdom in that moment. That was very clever of them. I, too, have found it difficult for YEARS to come out with the diagnosis. Those who were closest to me who knew my entire journey kept begging me to share with other people as they can learn and benefit from the things I’ve done to feel and do better. I was even being told by medical staff who barely knew me but was caring for me that I needed to speak up. I took it as a sign.
There’s still been a little tiny hangup left about sharing that I’m actively working on to get rid of. I am doing this by connecting with other individuals and just openly talking about it when the topic is relevant. I just had to come to the conclusion that there should be no shame in sharing what I went through with lupus nephritis and that I can actually be an asset in helping other people to heal/feel better.
Hello Netert, thank you for sharing your story with me, I feel honored. I don’t know why some of us choose to carry this unnecessary weight and painful stigma, but that seems to be the rule withing people diagnosed with lupus. I am glad to hear you are sharing your story, that will make you feel better and for sure, it will inspire and help others. Let’s connect via Instagram? My IG is @lupushope. Wishing you all the best in this new phase. Be safe and stay healthy.