Lupus and Guilt: Feeling Guilty For Feeling Bad
In her debut column for Lupus News Today, lupus patient specialist and columnist Kellie McRae opens up about the guilt and uncertainty she felt in the early journey toward her lupus diagnosis, and the impact that her rapid weight loss and declining health had on her family.
I will be honest, I don’t do well with guilt trips. Once I got the diagnosis of lupus I took a major road trip — a guilt trip as it were. My kids have tried them, my grandmother and even some employers, but usually I don’t fall prey to them. I am usually quite decisive and forge ahead knowing I made a great decision and that people will eventually see the wisdom in what I’ve come up with. Insert lupus. This wasn’t a decision I made, it was thrust upon me. I wouldn’t wish this disease on my worst enemy. So, when it reared its ugly head on me I took on a great amount of guilt.
At the time of my diagnosis, my son was in his third year of college and my daughter had just moved from our home in Florida to Atlanta to take a great job. She was just really getting settled. Right away, my daughter began taking long weekends and either flying or driving down from Atlanta to put eyes on me. My son, who was not quite as financially able, was losing his mind only four hours away but doing his best to hold his worry to himself. Every time I would call him to give him an update, I could hear the concern and hurt in his voice regardless of how he tried his best to shield me from it — his attempt at being a strong man.
My children are not children, and here was all of this guilt I had for worrying them — for causing them to step out of their comfort zones of knowing “Mom was the Hurricane” who always whipped in and took care of business. Now, I was the one in need of someone to whip in and take care of business for me. This caused even more guilt.
In September 2015, I was 170 pounds By January 2016, I had dropped to 112 pounds and couldn’t walk and talk at the same time. In April, my family and friends packed my life up and moved me to Atlanta to live with my daughter. Insert even more guilt. There I was living with my single daughter. All I could think of was “the longer I stay here, the harder it will be for her to meet a great guy because she’s busy taking care of her mother.” Guilt, guilt and more guilt.
My weight was a huge topic of discussion because it was going down in record numbers and in record time. For my son, when I finally reached 112 pounds, he finally broke down. To hear him cry over the phone was one of the most difficult things I think I’d heard since he became an adult. More guilt. I felt like I should be able to control the situation so they wouldn’t have to deal with the madness none of us chose.
You would think that the rational person in me would realize that I had no choice and that feeling guilty was not the way I should feel. Yet, the guilt was and is still strong depending on how I am feeling. I spend a great deal of time keeping bad days to myself because I really want my kids to stop worrying. With each passing day and every conversation we have about this disease, the effects, and how I am working to care for myself, the guilt diminishes. I know they are old enough to accept that this is not something anyone chooses. Make no mistake though, keeping the guilt at bay is also something constant for me.
I think that anyone who has children will tell you that it is widely held that parents should always pass on before their children. Yet we all know that life does not necessarily follow our beliefs. My mother in particular became so entrenched in research that I think she can give any medical researcher a run for their money. Every time I spoke with her she had some name of some disease that fit my symptoms and that I should ask my doctors about. Trust me when I tell you that I went to them with every single item she found. Not just because my symptoms fit, but because she was consumed with worry and was desperately doing her best to hold on to me.
I will be honest, this post has me in tears as I recount the various conversations I had with my family members and the agony they experienced until we finally found a name for what was happening to me. Again, my weight was the thing we all seemed focused on after the swelling of my heart was under control. Ironically, they say that women are more nurturing and men usually hold back on their feelings. Well, in my family, while my father often says “I love you,” my mother . . . not her style.
When I phoned to tell my mom that I was down to 112 pounds it was all she could take. My mother sat on the phone over 1,200 miles away, broke down, and not only told me how much she loves me but that she would not be able to handle losing me. Guilt. Crazy, almost insurmountable guilt was what I felt because I had no way to tell her that things were going to be OK, especially because I’d already written my will, reconciled my life, and had secretly started referring to this as “the year of the tombstone.” I too thought I was outta here, so the idea of telling her all would be ok was not something I could tell her. I didn’t believe it myself.
My dad was the opposite. He is usually quite talkative, and would call and ask how I was. When I was honest, the phone calls were getting shorter and shorter. I told my mom that I felt he didn’t believe me. Interestingly enough, that also caused guilt. I felt like I was lying to him because the doctors had no name, initially, for what was happening to me. They acknowledged that something was going on, but they had no clue yet for exactly what. So it seemed to me, if I couldn’t prove to my dad that something was wrong, then I should not mention anything. I felt a different sense of guilt with my dad than with my other family members — but I still felt guilty. When I called my dad to tell him about the numbers on the scale, I learned that it wasn’t that he thought I had nothing to worry about. I learned that he had no clue how to help me and that feeling helpless was overwhelming for him. More guilt for me . . . guilt, guilt, guilt.
Stop the Madness
I wish I could say that the feeling of guilt finally goes away. It doesn’t — it rears its ugly head quite often. Am I dating myself when I mention Susan Powter? She used to scream “Stop the insanity!” She became so well-known for that phrase. Well, that’s how I feel about guilt except I call it “madness.” Stop the madness because it’s mad to think that you are causing people to worry, causing people to cry, causing people to reach out to help you, causing people to care more. I tell myself, “You didn’t make this decision, they realize that. You didn’t cause this, they realize that.” Guilt is a different version of worry and stress.
And they are triggers for lupus. We must do our best to stop this madness and focus on our well-being. I know that it is easier said than done. I have adopted a list of positive affirmations that include telling myself that my diagnosis is not cause for guilt, but cause to bring awareness and help so others understand. You can’t feel guilty about helping others, can you? This has helped me. I am pretty vocal about lupus, self-care, and eating well. I don’t know is it’s a solution for everyone. Some days guilt still creeps in, but most days it works. What do you do when you feel guilty because of your diagnosis?
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