About Lupus

Lupus: The Importance of Grieving

Grief is Normal and Expected

Lupus can really disrupt everyday life, including your sense of self and feeling in control over your health and body.  A major struggle when living with lupus is losing the ability to do some of the things you were once able to do. This can even include activities that help define who you are like working, playing sports, socializing, driving, pursuing hobbies, and more.  It’s normal for people to evolve and grow over time and develop different interests, lifestyles, and relationships. But in a perfect world, people make that decision on their own; in a perfect world an illness like lupus doesn’t decide when it’s time to call something quits.

Although these are losses of abilities or experiences and not losses of loved ones, people need to know that it is natural to grieve them.  Any loss, whether death related or non-death related, can bring about the grief process.  Grief is defined as the emotional, physical, behavioral, cognitive and spiritual reactions to loss. Just like you never stop missing a person who has died, you may never stop missing something you were able to do in the past. Also, grieving isn’t only for the newly diagnosed. You might be confronted with new losses along the way if your health status changes. For your emotional health, it is important to process grief and not ignore feelings associated with these losses.


Your Life Can Be Meaningful

During this grief process, you will have different answers to the question, “Can my life still be meaningful despite these losses and despite lupus?” By giving yourself permission to grieve your losses, you can get to the point when your answer will be, “Yes.” As you move through grief over time, you make sense of your experiences and heal.  Grief forces us to learn more about who we are and discover pieces of ourselves we didn’t know were there.  Often we learn how resilient we really are.  Most people are resilient!

With time, it should become easier to believe that there are other activities, hobbies, lifestyles, or relationships you can enjoy.  At one time you felt a loss of your sense of identity, especially if you couldn’t do a lot of the things that made you feel like you. But over time, you begin to adapt to the changes and challenges lupus brings. You start to develop new interests, and a new lifestyle. You realize that in many ways you are still who you were, but in many ways have learned a lot about yourself and have grown.

To paraphrase a woman with lupus who recently shared a very helpful perspective with us:

“Every time I had to give something up due to lupus, I replaced it with something new, including things I wasn’t necessarily very good at before being diagnosed. I refuse to look at these losses as having to give up on living a meaningful life. I am a better person because having lupus has forced me to explore new options, evolve, and grow as a person. By trying things I might never have done, I feel I have overcome many of the challenges lupus brings.”

Depending on where you are in the process of grieving the losses lupus has brought, you might not be able to imagine feeling the way this woman does. Maybe you are feeling angry that you have to consider something new because you loved what you had. That is normal and part of the grief process. But maybe when you are feeling very sad, reading her words, or speaking to others who share her point of view can give you hope that one day you will feel better, emotionally, and feel that you can live a life that you can enjoy.


Coping with Lupus

Grieving is a part of the bigger picture of coping with lupus. Going to the doctor and taking your medication are only the first steps in coping. Here are ideas from a recent talk I gave on how to create a coping toolkit.

It’s very important to find support to help you cope with lupus and with the grief process.

  • I often encourage people to seek support from a psychotherapist, but not all therapists specialize in grief. If yours does not and you would like to speak to a grief counselor, check this directory.
  • Barbara Rubel, MA, BCETS, a bereavement specialist, offers free grief support (whether death related or non-death related loss) through email. Her email is griefwork@aol.com.
  • I strongly encourage you to become part of a lupus support group. You can try the Lupus Research Institute’s National Coalition for a lupus organization in your area.
  • If none show up, check online or in the phone book for a lupus organization in your area.
  • If there are no groups in your area, or you are homebound, you can do an online or Facebook search to find one.
  • While located in New York City, the Hospital for Special Surgery offers free peer telephone support, nationwide in multiple languages.
  • More information on grieving: