A hand draws a lupus butterfly in chalk on a chalkboard.

Teaching Siblings About Lupus: Sometimes There Is Guilt

I am the oldest of 3 children that my mom has. My sister (who is the middle child) is 4.5 years younger than I am; my younger brother is 4.5 years younger than my sister. My mom was diagnosed with lupus right after she had my brother. This is an important point.

Growing up with a mom with lupus

As we got older, I came to learn about my mother’s lupus before my siblings. I was older and was already expressing an interest in the hard sciences. So I began to learn quite a bit about it. When the time came, I would have conversations with my siblings about lupus, what it is, how it can affect our mom, and try to answer any questions that they may have. One of the most difficult questions that I got from my younger brother was, “Did I make mommy sick?”

Since my mom was diagnosed around the time that he was born, he immediately attributed her sickness to his birth. I found this interesting and saddening. But what this also did was introduce me to an emotion that I had not yet considered for myself, my siblings, or even more so my mom—guilt. At that moment my brother felt guilty. He felt that because HE was born, our mom had a disease that she would carry for the rest of her life. I had to assure him (to the best of my ability with the knowledge we had) that he was not the reason that she was diagnosed with lupus.

Guilt manifests differently

This conversation also forced me to think about what emotions my sister or my mom may be feeling. I know that guilt can manifest differently in different people, but it can also manifest differently for different reasons.

  • My brother felt guilty because, from his perspective, he was the reason that my mom had lupus. My mom had given birth to me and my sister without receiving the diagnosis. But his birth, again from his perspective, was different. But I had to tell him that we (the science community) do not fully know why or how lupus is caused. But we can say with a great deal of certainty that it was NOT because of his birth.
  • My sister and I have experienced moments of guilt because we have thought back to times where we may have expected certain things of my mom, that she may not have been able to do because of lupus. There were times that I felt guilty because I had 9 years of my life where my mother lived without the effects of lupus (that we know of) that my brother did not get to experience. My brother has only ever known my mother as she has had lupus. I played a lot of sports growing up and felt guilty for the times that she had to wait with me outside being exposed to the South Florida sun.
  • I knew that my mom may have also felt some guilt because she felt that there were things that she knew that she wouldn’t be able to do moving forward, that she would want to do with us.

Guilt can be powerful

Guilt can be a powerful or crippling emotion. It has to be appropriately managed. I was glad that I was able to talk through this with my siblings. It was not just a single conversation; we had several conversations about this over the years. But that is the important thing…having candid conversations and open communication about things.

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