I Feel Guilty About Less Lupus Pain Despite New Symptoms

I Feel Guilty About Less Lupus Pain Despite New Symptoms

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.


  1. CMS Sanders says:

    Hello my dear;
    One of the hardest things for me to adjust o with Lupus is that it is constantly changing. My flares are very different now. My lungs are having issues and I’m having small symptoms too numerous to mention. I have said (for the last 20 years) lupus is like being on a run away freight train. Sometimes we get a little relief or help but then is goes out of control again. Sometimes it wears me down. I fear that I will just give up. I cooked for Thanksgiving. 4 recipes (that I have cooked a million times) I managed to mess up or forget ingredients. I hate the brain fog. There are thing I avoid doing on days when I cannot concentrate. It makes me feel old and useless. Thanks for listening….don’t give up. We really need people like you to share honestly. You give so much to all of us. I wish I could make you feel better. Hugs from far away, Chris

  2. Berniece S Payne says:

    Hello I just wanted to say that I feel the same way and that I tend to sabotage myself when I begin to feel better. It’s a subconscious thing that I do I don’t even notice that I do it. But I sure wish that we would stop terrorizing ourselves.

    • Kellie McRae says:

      Hey Miss Berniece, wonderful to see you here lady. Yes, its true, we do beat ourselves up. I have started doing morning meditations where I tell myself that I deserve to feel good and have a full, healthy life. I think we see so much pain in others that our compassion for them somehow makes us feel like we have a lot of nerve feeling good when others feel so bad but if we could all feel better, wow, how awesome. We can be an inspiration to those who still feel bad because when they are down, we are up and we know those downs so well and can hopefully talk them through them from a true point of understanding while offering hope of better days. I hope you will recognize the behavior, stop self-sabotaging (I will join you in that) and let’s celebrate when we get those wonderful victories.

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