a woman with lupus stands with her hands on her hips, ready to take on monsters that surround her

Managing the Unexpected Expectations

One of the most interesting things that I encountered having a parent living with lupus is that it can sometimes come with unexpected expectations. Not necessarily from me, but from my mom. This experience has been both challenging and rewarding. Being that my mom has lupus, perhaps through coping, she has developed certain characteristics. In no way are these traits a negative thing...in fact, they’re quite positive. But during a recent conversation with my mom, we both realized that she may have inherent expectations of those around her, based on her own experiences.

My mom is resilient despite lupus

As an example, it goes without saying that my mom has many days when her body aches to the point of immobility. Her pain could very easily justify days off or breaks—without much debate. But one thing I have learned about my mom is that she has never used her diagnosis as an excuse. She is one of the most resilient people I know. She will often push through her pain and fatigue.

As I mentioned, this is a great quality to have! So where is the problem? Well, given that she has the ability to push through her pain and fatigue, she almost expects others to have the same ability. She has a legitimate reason to pick a day and lay in bed and not do a thing. So, for a young, fairly healthy individual (like myself), she has a difficult time fathoming how I could be “too tired” to do something.

The juggling act of lupus

Since she has been diagnosed, her life has been riddled with unknowns. She has had to handle the normal (or expected) complexities of life but has also had constant curveballs being thrown her way with her diagnosis. Support for African American women with lupus was not very common. This meant that she had to develop independence to learn how to navigate through the difficulties of dealing with her diagnosis. She had to learn to ask difficult questions, be her own advocate, and even conduct her own research on lupus to ensure that she remained informed of any advancements.

Naturally, this independence was not compartmentalized and would bleed into other areas of her life. It almost went without saying, that if we (my siblings and I) did not know something that we felt we needed to accomplish something, the responsibility was ours to figure it out. There was really no good excuse to not know something.

Experiences, expectations with lupus are different

This conversation and realization was an important one for us. While our experiences with lupus are different, it’s true that we both have expectations. Over the years, some of my mom’s expectations are shaped by her experiences with her diagnosis. This is not a bad thing, but it was important for us to identify where there may be some discrepancies.

I had to understand that she has become stronger, more resilient, and independent as time has passed. I will never be able to fully understand the things she has had to overcome to simply get through her days. On the other side of that proverbial coin, my mom also learned that others may not have developed the mental and physical toughness that she has; she will be disappointed if she expects others to live up to the expectations that she has for herself. Interestingly, having lupus — where her body quite literally attacks itself — has made her much stronger than many other people around her!

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