Lupus Remission Guilt

You’re in remission – that is fantastic! So why do you feel so guilty? Keep reading in order to
learn more about lupus remission guilt and how to manage these feelings.

 

Introduction

Living with chronic illness – including systemic lupus erythematosus– can cause an individual to experience a gamut of emotions. At times, they may feel anxious or fear about the unknown, joyful when having enough spoons to get through the day or sadness if school or work is missed because of health. No one is ever really fully prepared for the feelings being ill can bring – the emotional side of illness can be as complex as experiencing the physical symptoms themselves. There may be times when an individual’s resiliency and resolve may be stronger some days than others and therefore, coping with the same issue can cause completely difference emotions.

When an individual with lupus enters remission, however, the same myriad of emotions may still exist. While the focus is usually on improved physical health and the relief of loved ones, an individual’s emotional well-being may be taken for granted. Meaning, if they are physically well, they should be mentally well. An individual’s support system may even tell their loved one that they should feel lucky to be in remission and should be happy to be (mostly) healthy again. The individual themselves may think that they should feel relieved to be healthy and out of danger, but for some reason they cannot. They may actually feel guilty for not only being in remission, but for not being able to emotionally feel better, too.

What is Lupus Remission Guilt?

Remission guilt is a real emotion. Originally coined in 1943 by Drs. Stanley Cobb and Erich Lindemann as “survivor’s guilt,” an individual may experience this nature of guilt when they survive a traumatic experience such as recovering from long-term illness, surviving a natural disaster or even war. An individual who is fortunate enough to get through these events and survive may ask themselves, “Why me?” or “Why not her?” They may also begin to question their own worthiness or even willingness to feel better.  Attaining remission can mean a huge lifestyle change that may be difficult to emotionally navigate after feeling so bad for so long. It may also mean feeling like they no longer belong or will no longer be accepted by those still struggling with managing lupus symptoms. These emotions can be hard to juggle and balance in a healthy way.

Angela Long explains some of the emotions that may be experienced with remission (or survivor’s) guilt:

  • Empathy: Feelings of empathy towards others may increase as one becomes more aware of others’ challenges when they are no longer so focused on their own health. An individual may experience a range of emotion from sadness for others to hope.
  • Sadness: The sadness experienced through empathy for others needs to be released. Long recommends using the shower as a place to release those tears because a shower can be a safe and soothing place with no one around to hear or interrupt. Long also suggests, however, that after the tears are released, the individual listen to upbeat music or participate in some activity – even if it is just completing route tasks – in order to stay upbeat and focused on something else.
  • Anger: With anger comes a lot of energy that needs to be released in a healthy way. This tension can be dealt with by identifying triggers and working on how to cope with them … even the occasional healthy venting to someone who is supportive might help release that tension.
  • Grief: An individual who is now in remission may not only grieve those who are still very sick or who have not survived, but ironically they may also grieve their past life when their lupus activity was high and life was different, but manageable. Grief can include feelings of lethargy, sadness, irritability and changes in sleeping habits. Long recommends patience as the best thing that can work over time to alleviate feelings of grief.
  • Anxiety: Destructive, anxious thoughts include over-generalizing, catastrophizing, assuming, dwelling on the negative or comparing oneself to others. A therapist can help an individual develop coping skills to manage anxious feelings and thoughts. Activities such as exercise, yoga, mindfulness meditation or even journaling can also help manage anxiety.
  • Pressure: An individual in remission may feel pressure (often placed on themselves) to help others and give back. While this is a great way to stay engaged and active and share experience and knowledge, an individual needs to honor how they are feeling and not be afraid to still ask for help from others when they need it, too.

Shame vs. Guilt in Lupus Remission

Now, something about shame and guilt – two emotional experiences that have a good deal in common and sometimes experienced together.  It is not unusual for individuals feeling remission guilt to also experience shame, and it is important to understand their differences in order to better understand and deal with each.

Guilt is felt when an individual acknowledges to themselves (correctly or incorrectly) that they have done something wrong. It is a very internalized feeling because the individual experiencing the guilt does not necessarily worry about how others perceive them – they only concerned about their own knowledge of their guilt or innocence. When an individual feels guilty, their own conscience tells them that they have done something wrong and they feel remorseful about it – even if no one else blames them. An individual experiencing remission guilt, however, is experiencing unhealthy guilt because they believe they have somehow wronged others who are still experiencing symptoms by becoming well. No matter how many times others may celebrate the individual’s remission, they may still feel bad about it.

Joaquín Selva, Bc.S. explains that shame is “[regretting] some aspect of who [an individual is] as a person.”  Yet, shame is more externally focused than guilt. Shame occurs when an individual worries about how they appear to others, and so it has more of a social context. Shaming requires others to be the source of judgment and blame for the individual who feels it. That person may feel others are constantly judging them because of a perceived fault. An individual with lupus may be ashamed of their chronic illness because of how it will look to those who are healthy.  While someone in remission may also feel ashamed because their perception of how those not in remission might feel about them.

Guilt:  “I feel badly because I don’t deserve to feel healthy again.”

Shame: “I feel badly because others think I don’t deserve to feel this way.”

 

Managing Lupus Remission Guilt

Leonard recommends the following for managing remission or survivor’s guilt:

Accept and allow the feelings.

It is important for the individual to allow themselves time to feel what they are going to feel and remind themselves that they can handle it. There are no “shoulds” when it comes to human emotion. Emotion is healthy. Denying emotion, however, is unhealthy and can be detrimental to overall well-being.

Connect with others.

One of the best things an individual can do is to find others with their same experiences.  It is important to find and attend support group meetings with individuals who have lupus whether or not they are physically feeling better. Not only will others be encouraged by their story, but the individual themselves may feel useful and a source of hope. Often, the knee-jerk reaction is to stop attending support groups because an individual feels better and assume they do not belong anymore because they are in remission. This is actually the best time to attend. There may be opportunities to mentor or advocate for other support group members or volunteer for the organization hosting the group.

Use mindfulness techniques.

Breathing exercises, acknowledging thoughts, focusing on surroundings and the sensations the environment causes (touching, tasting, smelling, hearing and seeing), or even just meditating quietly for a moment or two can be ways for an individual to ground themselves. Yoga can be a great way to more “actively” meditate as both movement and breath need to be aligned.

Practice self-care.

Get a massage, rest or nap, eat healthy food or exercise can be ways to practice self-care. Even journaling, listening to music or watching a favorite movie can provide respite from overwhelming feelings of guilt. An individual should also make sure to start any new activity with care and pace themselves and not force things when they really just may want to or need to chill out.

Do something good for others.

As mentioned earlier, volunteering or mentoring may be great ways to get involved and do something good inside or even outside of the lupus community. Advocating for others with lupus and educating others can also be a great way to stay involved and “pay it forward.” Offering services to other organizations may be a great way to broaden horizons, expand social circles and balance other interesting aspects of life with lupus.

Seek professional help.

Talking openly and honestly with a trusted healthcare practitioner can open the door for seeking emotional help – they can help an individual find appropriate therapists to manage emotional health. Cognitive behavioral therapy is a great way to openly and safely discuss how an individual is feeling. Therapists can also provide coping strategies in order to manage guilt, PTSD or any range of feelings and individual may be experiencing. Sometimes it just feels good to talk to an unbiased third-party about what an individual is experiencing.

In Conclusion

Remission means change, and change can be stressful – even a change that you have spent years hoping for! While remission guilt is common, it does not mean you have to live with it day in and day out.  No one has to make it their new “normal.”  Everyone experiences lupus differently and everyone can experience remission differently.  That fact alone should remove some of the pressure that someone feels to react to remission a certain way. Identifying the symptoms of guilt and learning how to manage those complex feelings may be some of the most important skills to develop in the journey from lupus to a healthier life.

 

References
Selva, J. (2019, April 7). Why shame and guilt are functional for mental health. Positive Psychology. https://positivepsychology.com/shame-guilt/
Long, A. (2014). Survivor’s guilt – let me count the ways. The Oncology Nurse, 7(4). Retrieved February 18, 2020 from http://www.theoncologynurse.com/ton-issue-archive/2014-issues/july-august-vol-7-no-4/16184-survivor-s-guilt-let-me-count-the-ways
Leonard, J. (2019, June 27). What is survivor’s guilt? Medical News Today. https://www.medicalnewstoday.com/articles/325578

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

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