Lupus and Grief

Lupus and the Roller Coaster Which is Grief

Grief (as defined by

“Keen mental suffering or distress over affliction or loss.”

Grief (as defined by someone diagnosed with lupus or another chronic illness):

Overwhelmingly keen mental anguish, suffering and distress over the absolute topsy turvy and unexpected negative turn of events in his or her life.  Conflicting feelings of denial, anger and sadness all swirling around the end of all that is familiar and hoped, and now gone.” 


First of all, it is a common and natural reaction to experience grief after being diagnosed with a chronic illness like lupus.  Discovering that you have an incurable and often life-altering disease, is CERTAINLY a loss in many ways.  Perhaps you feel like you have lost most of the hopes and dreams of the future life you’d anticipated living.  Perhaps you feel like you have lost control of what you can and cannot do with your own body. Perhaps you feel like you have lost the power to stay connected with your significant other, your children, your job.  Those are a myriad of feelings and losses and they are valid reasons why someone may experience grief.

Digesting the news of your lupus diagnosis can bring a flood of distressing emotions.  Additionally, research suggests that people who have a history of depression and/or stressful events leading up to diagnosis, may have in increased risk of experiencing grief or psychological distress when diagnosed with lupus.  Moreover, people with chronic illnesses like lupus are at a higher risk for developing depression.  Studies have shown that as many as 60% of people with chronic illness can face depression at some point in their lives.

With that being said, we, at Kaleidoscope Fighting Lupus feel it is particularly important to recognize those in the lupus community who are dealing with grief and validate those feelings by providing ways to help you cope through resources and support.


Whether you have lupus or not, when anyone suffers a loss, inevitably he or she will experience the five stages of grieving.  These stages are based on the concepts developed by Elisabeth Kubler Ross and David Kebler, they are:

  1. Denial: Denial is a defense mechanism that people use to block the immediate shock of a loss.  By cushioning the blow with denial, it helps them hide from the facts and reality of the moment.  Emotions are so overwhelming during this time that our normal physiological response is to try and rationalize our feelings by neutralizing them.  It is the “This isn’t happening” or “This couldn’t happen to me” stage.  Other emotions during this stage are: avoidance, confusion, elation, shock and fear.
  2. Anger: As the masking effects of denial begin to wear off, the reality of the situation can appear and pain can re-emerge.  This can once again send shock waves that shake our very core.  Sometimes the only way our bodies know how to redirected and express these feelings is through anger… angry at the world, angry at our family and friends, angry at the disease, angry at inanimate objects.   Other emotions during this stage may include: frustration, irritation and anxiety.
  3. Bargaining: The normal reaction to feelings of helplessness and vulnerability is a desire to regain the reigns of control in your life through a series of “If only” statements and thoughts, such as:
  • If only I had taken better care of myself…
  • If only I had gone to the doctor sooner…
  • If only I had been a better person in my life …then maybe…this wouldn’t have happened!

This is our secret deal we make with God, and ourselves in attempt to “stay calm  and carry on” and hopefully, through bargaining, postpone the inevitable outcome of our disease.  Other emotions often felt during this stage: guilt, shame, and struggling to find meaning.

  1. Depression: After bargaining, we attempt to face our present situation.  What can follow is depression.  Feeling empty, feeling grief on a whole other deep level.  This can be one of the hardest stages because we feel it is “not okay to not be okay.”  We beat ourselves up about being sad, and often think we are crazy or weak because we are depressed.  But, it is important to remember that depression is not a sign of mental illness.  It is a normal physiological response to a loss.  This stage can feel like an eternity, as we withdraw from life, isolate ourselves, walk around in a dense cognitive and emotional fog, and sometimes contemplate life itself. Other emotions during this stage: feeling overwhelmed, hostile, and helpless.  This can cause: sleeplessness, intense anxiety, fatigue, and physical pain.
  2. Acceptance: Reaching this stage of grieving is a gift not afforded to everyone, because it is a definitive choice one has to make.  Acceptance does not mean that you have to feel happy about having lupus.  It does not mean you are always “alright” with your lupus journey.  You may never like and be “alright” with the fact you have this illness.  Acceptance just means being present in the here and now and learning to embrace the normal up’s and down’s of your new normal. Ultimately, acceptance means having more healthy emotional days than unhealthy emotional days. Acceptance means, even though things are not, and will never be perfect,  learning to live again.  Other emotions during this stage: exploring options, curiosity, and planning.

Interestingly, people don’t always process in this order.  You may feel like you are on a roller coaster of emotions- one day you are accepting of your diagnose and the next day you are in denial about it.  One day you can be sad, and the next you could be very angry.  Let me reiterate to you, that this is normal!  So any guilt or shame you are projecting onto yourself, is unnecessary and ultimately destructive.


I am not going to lie to you – there are still some days (after living with lupus for 27 years now) that I am in denial about my illness.  There are days that I bargain, plead, get angry at the world, get sad and THEN I am okay.  However, in general, I have learned that accepting and facing my lupus is the best way to cope.  

How can you actively face your illness? The first step is establishing a good patient doctor relationship.  You can be empowered by taking active steps in optimizing your health and asking questions about your illness. Knowledge and shared decision making with your doctor can help you control the controllables.

Another way to help you cope is to follow the B.G.T.Y. Theory or otherwise none as “Be Good To Yourself.”

  • Surround yourself with supportive people:  If you have great family and friends around you, this can be an important network to anyone with a chronic illness.  If your family or friends are far away or they ‘just don’t understand,” then try to find online or local support groups for other lupus or chronic illness sufferers,  like the ones here at Kaleidoscope Fighting Lupus!
  • Try to maintain a healthy lifestyle:  In spite of the lupus, it is important to continue to be good to yourself, eat right, get enough rest, and exercise regularly
  • Just take one day at a time:  Why worry about tomorrow when all you can control is what you accomplish today?  It may help calm the overwhelming feeling of worry about all you need to do and just help you get through this day.
  • Try to stay active: Even though you have days that you will not feel up to moving around, try to stay active in general. Be engaged in hobbies, clubs, groups, yoga or tai chi or any other mind-body exercises.  This kind of engagement can really lift your spirits and make you feel empowered over your illness.
  • Keep a ‘go to’ list of things that make you feel better:  Things like a funny movie, music you enjoy, a special walk that makes you happy, hanging out with friends.  Keep that list handy for those tougher days. The mind/body connection is a very important factor in your well-being.
  • Stay informed about lupus:  The more you  know about your medical options, the more questions you ask of your physician and other  medical providers, the more empowered you will feel!
  • Watch that negative self- talk:  Replace it with positive self-talk.  We are all guilty at times of being our own worst enemy.  Unfortunately, over time, that negative talk can wreak havoc on our self-esteem.  Be kind to yourself, having faith in the knowledge that you are doing the best that you can on any given day.  Lupus is unpredictable and if laying low for a while (a day, a week, a month or several)  is what your body demands, then that is honoring your body and your well-being, so be kind to yourself!


The difficult feelings of grief are like tunnels, and we are the train that has to travel through them.  We all have moments of darkness, moments of fear, moments of feeling like we don’t deserve this or are angry that we have to be in the dark at all.  However, we have to travel through the darkness to get to the calm, peaceful light at the other end.  As Helen Keller once said, “The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.” And that is true, even though it doesn’t always feel like that as we experience grief.


Lupus support groups can mean different things to different people. For some, it is a place to talk about your grief, for others, a place to listen. It is both a place to share your experiences, and to learn from the experiences of others. Most importantly, support groups are all about the emotional and physical support that comes from a community going through the same things you are. And when you build s strong support network you can rely on, it can help minimize stress.

And lastly, learn to love yourself despite your illness. And learn to show yourself grace – because everyone experiences grief on some level.  You may at times feel all alone, but take heart lupus warrior, you are NEVER alone.

Click here for information on lupus support groups.

Click here for information on severe depression and suicide prevention.

Click here for a national list of counselors and therapists.


Author:  Kelli Roseta

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.



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