I Feel Guilty About Less Lupus Pain Despite New Symptoms

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by Kellie McRae |

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When I was diagnosed with lupus, I put on my battle gear and went to war. I changed the food I ate, how I cared for myself, the country I lived in, my career, and even my attitude. I learned to mind my business. As a former fashion blogger, real estate professional, and fitness competitor, appearances mattered to me and that led to me passing judgments on others. Sometimes I look at my life now and wonder if lupus is serving me up all of my judgy karma.

I remember speaking about skinny women I’d see out in restaurants eating salads. I’d joke and say, “That broad needs a cheeseburger.” Now, I’m the broad who needs a cheeseburger, except they are not good for my body. I made comments that were none of my business. I thought people could exercise their way to health, that everything could be solved with a run, some weight lifting, and some chicken (gotta get that protein). Now I realize that I was telling stories that were not mine to tell.

I’m a solutions-driven person and as I battle with food, finances, career, spirituality, and mental crap, I find myself in a major funk. Lately, I have experienced reductions in pain and brain fog. However, the guilt I have about feeling better has led me to sabotage my dietary plans. I ate foods I knew were potential pain triggers. I asked myself why — days before I’d shared with a friend that I was feeling better and had more clarity, but that I feel guilty for this improvement when I see others in pain. So, I had to “fix” that.

I may have finally found a solution for my brain fog and pain, but I’m struggling with new symptoms such as muscle weakness that sometimes causes me to topple over without warning. I feel like an old woman as I struggle to complete basic tasks: Even opening a bottle of water is a challenge. I would prefer it if I didn’t have to take so many medications, but the pain would be too much. I have done the cold turkey thing before (don’t do this — it’s foolish) and, of course, I suffered before my diagnosis. Lupus pain is not for the faint of heart, that’s for sure.

I leave my home less and less. Some days the sadness is so overwhelming that I don’t want to sleep because when I do, I am jolted awake by anxiety or disturbed by dreams about the issues I’m not ready to face. I am taking on more work and filling my days with a rigorous schedule (may as well take advantage of my increased clarity). I do my best to think happy thoughts, but I have many sad moments.

I socialize less because I’m reluctant to try to explain to strangers what is happening to me should my body decide to rebel while I am away from home. If I stay home at least I am in my comfort zone. I will continue to figure out solutions — but I am tired. Yes, I’m still smiling because I’m a special slice of crazy — lol.


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.