Lupus sucks. Let’s just acknowledge that from the onset. I was living an awesome life, and then it came to a screeching halt. Lupus was pretty aggressive with me. Almost immediately, I felt anxiety and confusion, and eventually, anger. These are signs of depression, but I didn’t know that at the time. Now in all fairness, I was already dealing with some underlying anger anyway, so I also did not realize that lupus was making that worse. I just figured it was something I still needed to work on.
When you get a life-changing diagnosis, there are a lot of unanswered questions, and I will be honest, I don’t ask a lot of questions for which I know there will be no answers. I see that as a perfect waste of my time. Who is going to tell me why I got lupus? The question for me becomes more about how to deal, how to feel better, how to help others.
When I initially got diagnosed and shared my situation with others, I got a ton of unsolicited advice. At first, I was very cordial in accepting it and hearing people out, but lately, I notice something within me has changed — and, quite honestly, not for the better.
I am angry. I mean really angry. To the point of no-filter kind of angry. It’s not just about lupus, either. Recently, I have had a few encounters with people who have said things that I know were spoken out of sheer ignorance or because they found them to be funny. I did not find them funny, but in the past, I would have laughed it off. I would just allow foolish comments like “You’re so pretty for a black girl” to roll off me like water off a duck’s back.
Before, if people granted me permission to not do something because my lupus had flared up, I would take it as the compliment they thought they were giving. I find that I am no longer doing that. Now, I promptly let them know, “I didn’t ask, nor do I require, your permission.” I am saying exactly — exactly — what I feel in those moments, and it is really catching people off guard.
In those moments, I feel a weird sense of relief in my frankness, but social norms tell me this is not the best way to handle things. In a split second, I’ve decided that the speaker is not someone I want in my circle. I hope to never have to engage with them again, so I am basically rude.
Now, I pride myself on being self-aware and I try to correct things in my life that I know are not good for me or those around me. Is it bad to say that part of me does not want to correct this behavior? I did, however, review it so I would know why I was feeling this anger and taking it out on others. Here is what I have concluded: In each of the situations, I have felt diminished in some way. I felt the speaker was exerting control over me in a way that I didn’t appreciate.
With lupus, I already feel a loss of control over the things that were once enjoyable. I used to make swift decisions and carry them out. Now, lupus can change all the plans I’ve made by flaring mere hours before I am supposed to go do something amazing with amazing people.
Speaking my mind in that moment is my way of taking back the control that I feel others have tried to take for themselves. In the past, I would deal gingerly with these situations; now I am so blatant that people are visibly moved. The angry part of me takes a little pleasure in knowing that I made an impact. Hopefully, I also gave them some insight into what they may have said or done that was wrong.
I don’t know if I will actively try to change what I have noticed about myself, but I at least know about it and I know what motivates it. I will either embrace this new boldness or learn to tame it, along with my other symptoms of depression.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.