Last Friday night, I delivered a speech to over 400 people who live with Sjögrens (just like me). This disease effects approximately 4 million people in the US, yet is drastically under diagnosed and under supported by the medical community. Thank heavens we have the Sjögren’s Syndrome Foundation that produces these events so we can stay informed about our disease. The conference also gives us the ability to chat with other patients about how they manage their life with an Autoimmune Disease.
I was honored to deliver the keynote speech at dinner and even more honored that so many people responded positively to my story and some of the ideas I presented. As promised, I am gong to recreate the speech on this blog, so the tips and illustrations I presented can be easily available.
I will segment my speech into several blog posts, this first one focusing on my experiences the 8 years before diagnosis and the first few years after diagnosis.
Before Life with an Autoimmune Disease
As I stated in my speech, and referenced in the About area of this blog, I was a go-getter as a young professional woman. I was an early Microsoft employee who then went on to form my own multimillion dollar technology marketing firm. I was CEO of that firm for 17 years. However, the last few years, I was having medical issues and was completely exhausted. I sold that business in 2000. It was a bumpy sale and closure during the dot.com bust which added an extreme layer of stress.
Between 2000-2004 I tried to rest and heal. I created a consulting business to perform independent projects. Next up was a small Jazz production company to help manage some highly talented musicians. I was still exhausted and getting more ill and more dry. During this period I moved from Seattle to Palm Desert, thinking the sunshine would heal me. But it did not heal me and I continued to worsen. I thought the extreme eye and mouth dryness was because I lived in the Desert (well it probably didn’t help).
My Sjogrens Diagnosis
My body decided to break down and I was finally hospitalized in April 2005 for three weeks. However, it was not until January 2006 that I received the diagnosis of Sjögrens Syndrome. My first reaction was one of RELIEF! Now that we know what this disease is, we can CURE it!
I was placed on Plaquenil and was told that it could take up to six months to take full effect, so I thought that I would be back to normal in 6 months or less. I was not. Then the long journey of grieving began.
Living in the desert was not a great living environment for a Sjogrens patient, so I also needed to make a move to a more comfortable environment.
After moving to Sonoma, I sank into a depression because I could not figure out how to create a new life that included dealing with my Sjögrens. I always thought my life would be one of building businesses and traveling the world, and I was so tired that I couldn’t even imagine doing these things. I sought out a counselor to help me redefine myself….”who is Janet now? And how can I be happy with this new person?”
Life with an Autoimmune Disease — the Grieving Process
I began to work on the Kübler Ross stages of Grief with the mission of finding my NEW NORMAL.
Acccepting that I was probably not ever going to have a cure for Sjögrens was a tough pill to swallow and I knew that I needed to accept my “new normal” state of being. I began the work of determining how to still be ME, while altering how much time and effort I could put into living each day. One thing was for sure….I still needed to make a living and pay my bills.
Who am I with an Autoimmune disease?
So my kernels of truth about my personality that I felt I needed (and wanted) to maintain throughout my life:
- I want to be viewed as kind and very competent
- Ideas and productivity matter to me — I am an entrepreneur
- I was raised to believe you can achieve anything with hard work
- Learning is important to me.
- Travel and exploring cultures is a passion.
At this point in my Sjögrens Journey, I was 2-3 years past diagnosis (so around 2008-2009).
The next few blog posts will lay out my process and life plan for how I navigate living with an autoimmune disease. These are things that I have learned the past 10 years living with Sjögrens, and they work for me. I hope there are a few ideas that can help you, too.
What I can say is that I now am a generally happy person, living a life that fits my personality and accommodates the self-care I need to manage my Sjögrens. In essence, I do feel completely like “ME” every day….but just a little bit slower.
Living life with an autoimmune disease is not easy. Looking at patterns and creating a plan of self-care has been a big help for me. But this does not change the fact the life with an autoimmune disease is a challenge!
In the next post I will be presenting my personal model of Autoimmune Grief and Life.
Enjoying your blog, Janet. I’ve been recently diagnosed with Sjogrens and am trying to figure out what my “new normal” will be. I look forward to gaining some insight from your experience. Thanks for sharing!
Thanks for the comment! Were you at the patient conference last Friday/Saturday? I will be recreating the speech here as well as adding thoughts and experiences I’ve had over the years. You WILL find your “new normal” and you may experience the need to revisit different stages to redefine your “new normal” over time. Stay true to who you are (not necessarily the activities you used to do) and you will find your way! Sjogrens.org is a tremendous help and source of good information as well, if you are not yet a member…
I was not at the patient conference. I agree, the SSF is a great resource. I’ve purchased a couple of recommended books and have enjoyed reading The Moisture Seekers newsletters. I plan to attend the May MN Sjogrens support group so I can meet others with SS. Hearing personal stories, such as yours, gives me hope that I, too, can eventually live reasonably well with this autoimmune disease. Thanks for the quick reply!
I found out I had sjogrens shortly after my retirement from being a bank officer. I had always been an active person and a volunteer in our community. I also was relieved to know “It was not all in my head” I truly did have a problem to fight. I have learned I can still travel, and work a flexible job. I just need to take each day as it comes and rest when I have a bad day. Life is still good and I still travel and work part time.
Thanks so much for sharing your experience! I very much relate to the confusing and sometimes disheartening process of regrouping, recovering, and reinventing. I am on year 5 since my Sjogren’s dx and have just started a new teaching career at age 37. I spent five years living with my parents as a grown woman because I was struggling so much to figure out what I could with a body that no longer cooperated. I know that I will continue to face changes and make similar decisions in the future. Thanks for laying out your path. It is so helpful to see that this isn’t personal failure but rather an extraordinary adaptation!
Well Put Nicole! Extraordinary adaptation! Good luck with your new career…having passion and being productive goes a long way (even when we can’t perform at our “old” 100%).