living with lupus, day by day, moment by moment

At some point during the early months of my illness, all my feelings turned into anger (so much anger!), and it lives in me still.

In the winter of 2011, after the birth of my son, I started to get really sick.  My symptoms progressively worsened with each passing day.  By spring, I had lost weight and was suffering from immense pain.  By summer, I was barely able to walk.  I was wheelchair bound by the end of August and in September, I was hospitalized multiple times for inflammation in my central nervous system, heart and lungs.  I was released after chemo and with a treatment plan for outpatient infusions in place, I was brought home.  

Throughout this period, I experienced lots of feelings – sadness, frustration, confusion, loneliness, guilt, and fear.  But most of all, I was embalmed in a cocoon of denial – I always felt this was just a phase.  I was certain I was going to get better and I was going to “resume my normal life.”  I was out of the hospital and that must have meant that I was better.  But this was not the end. In fact, it was just the beginning of my suffering.  

 After I came home, I got even sicker.  There wasn’t more that the hospital could do so I was home but I was in pain 24/7.  I couldn’t sleep. I couldn’t eat. I couldn’t walk. I couldn’t talk. I was in and out of consciousness. and after a month of getting worse, something snapped in me.  Suddenly, all I could feel was anger.  I was so sick, so continuously for so long! I didn’t even know someone could be so sick for so long. Didn’t people recover? Isn’t that the normal way of things?

This anger grew, fueled by my worsening symptoms, by the loss of relationships, loss of career, and loss of self.  Five years later, I am still dealing with anger on a daily basis.  It’s as if my chronic illnesses and anger have become best friends and travel together. 

It is common for individuals suffering from chronic illnesses to feel angry about their disease. Many are familiar with the Kubler-Ross model, commonly known as the five stages of grief – denial, anger, bargaining, depression, and acceptance.  I think I am still at the anger stage.  Even though I have learned to keep it in check, it’s always bubbling underneath, biding its time to unleash its poison in me.  I feel like I’m always walking on a tightrope.  It is absolutely exhausting and many time, I cry out in anger.  And the worst thing is, both my anger and my physical symptoms can be triggered by unknown things.  I seem to have little clue as to why something angers me just as I don’t know why something sends me into a flare. Many days, I have learned to “manage” my anger but most days, I just want to lash out and throw things against the wall!!!  

3 thoughts on “Anger, So Much Anger

  1. OMG FINALLY someone who understands the way I am feeling!

    You hit it right on the head when you said “denial – I always felt this was just a phase. I was certain I was going to get better and I was going to resume my normal life. I was out of the hospital and that must have meant that I was better.”

    You would think right? I thought the same way for quite some time. I still do for that matter. And losing relationships (family and friends) and losing myself because of my illness just further adds fuel to the already flaming fire I have inside of me. Thank you so much for sharing.


    1. It’s really nice to hear that someone understands what I’m going through — and I don’t just sound like a crazy mad person!!! Thank you.

      Liked by 1 person

      1. Nope, you’re not a crazy mad person. There are others, including me, who feels the same way as you do. Thanks for being transparent and being that voice.


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