This is the second blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read the first blog Relapse to Reinvention. This post is about 10 Stages of Autoimmune Grief and Life.

After my diagnosis of Sjögren’s Syndrome in 2006, I began the difficult work of grieving the loss of not only who I was, but the dreams of who I wanted to become as a healthy individual. I was so exhausted and in such pain that I knew that I probably could not aspire to be CEO of a large company, or that I would not spend 50% of my time traveling. I also realized that I would need to incorporate new ways to care for myself including altering eating habits. 

This last one may not sound like such a big deal to many people, but one of my top pleasures in life is exploring the world looking for the most amazing food available in any culture…and pairing that with the local fermented beverage of choice! So yes, altering my love of food exploration (spices, textures, acids, heat, etc.) was a great sadness to me. There were many other things in life that I thought were too challenging to be worth the effort, however, this blog is about Reinvention and looking for new and fulfilling ways to live life and explore the world….so onward.

After several years of working the grief process after my diagnosis, I realized that I was having some troubles moving forward with some aspects of life. As I mentioned in my keynote speech at the Sjögren’s National Patient Conference last week, I spent a lot of time working my way through the Kübler-Ross stages of grief — I’d say about 2 years since I spent a lot of time in denial. I realized I was having trouble moving forward because I was experiencing so many other stages. 

What has happened throughout the past 8 years has been an interesting journey of clarifying all of the stages I experience and revisit. They became so clear to me that I now use them as a life model….like a business model, but for how I experience the changing disease states and challenges of my Sjögrens life.

10 Stages of Autoimmune Grief & Life

Here’s what I have learned and what is true for me. The below illustration is how I have experienced the different stages of grieving the loss of “myself”, living daily with my autoimmune disease, and adjusting in order to reinvent for my “new normal”. I have discussed this process with many autoimmune patients, and these stages seem to be similar for many people. Revisiting these stages, especially the ones that seem to be my achilles heel, is also common.

It all starts with relief.

Relief:  Autoimmune Grief

The first emotional stage I experienced after my diagnosis — relief. I literally thought “Now that I know what this is, we can cure it!”  I’ve talked with many people who have an autoimmune disease and this reaction is very common. I also feel relief when I turn a corner and spring back to life after a relapse.

Bargaining, Denial, Anger, and Depression:  Autoimmune Grief

These stages are the more familiar Kübler Ross stages of grief. They are prominent during the first couple of years after diagnosis, and they do pop up often when relapses occur or when I realize I can’t do an activity (or trip) that I really want to experience.  The one emotion that I have not visited very often in the past few years is Bargaining  (I know by now that making a deal with my disease just doesn’t pay off).  But the other emotions do still play prominently in my emotional sandbox.

Resignation:  Autoimmune Grief

Resignation is a place where I sometimes rest when I am not feeling well and I simply can’t gear up to do anything else. So I become resigned…in the place where I’m at…until I feel a little bit better to gather energy for the next stage. I want to clearly express that this is not a place of denial or depression…just resignation.

Acceptance: 10 Stages of Autoimmune Grief

The initial experience of acceptance was simply accepting that I have this disease and that life will not be the same. Acceptance is a cue to move forward toward reinvention and define your new normal. I have revisited acceptance over the years, when I have a new medical issue caused by my disease which requires a change in my life. Then it’s time to accept and move forward toward reinvention. I am better at moving forward now, with a decade of practice.

Assessment, Motivation, Reinvention: Autoimmune Life

These stages are all about determining:

1. what I need in order to define what the new normal will require (perhaps I need education in a new field so I can keep working, or learn new dietary approaches, etc.)
2. Building courage and the motivation to make the changes required for reinvention.
3. Reinvent myself and begin practicing the new life.

Here are a few things that I have learned about these stages after a decade of practice:

• My disease level can dictate the time I may stay in a stage. Don’t be fooled by thinking I am referring to only a bad disease level! Self-awareness at all times is an important practice with autoimmune disease (good days and bad days).
• I may bounce between stages, but I am better at navigating them.
• I may get stuck on my challenging stages (such as denial) but I tend to recognize it more quickly than I used to.
• If I’m not mindful about what stage I’m in, or if I leave denial too long, then it can slap me across the face and set me back into a relapse. (Like it did last summer).
• I am not perfect at practicing this model, but the more I do practice, the better I feel for longer periods of time.

I am pleased that these stages rang true for so many people at the conference. My next blog post will focus on how to assess where you are, honestly, in disease level and stages.

Please do jot me comments about these stages — are they true for you?