We’ve all heard it… You don’t look sick! When you live with an autoimmune disease, this comment is common. How do you react and then respond?
There are times when I’m happy to hear this comment and times when I’m displeased. I do have a prepared response for this statement, but it doesn’t always fit my emotional or intellectual needs at the time. I hear the comment often enough (and I know you do as well) that I thought it a worthy topic to explore. My hope is that this article gives you ideas to help you craft your best response for any situation.
I believe there are a number of factors to consider when determining the best response to You Don’t Look Sick. Consider your:
- Disease activity level.
- Emotional status.
- Time since diagnosis.
- Relationship to the person.
Each time someone tells you that you don’t look sick, you need to examine your answers to all of these questions and ask yourself the ultimate question:
Why do you care?
Continue reading “You Don’t Look Sick! How Do you Respond to this Comment?”
Last Friday and Saturday I was in Virginia at the Sjögrens Foundation May board meeting. The Board of Directors comes together for our live meetings every May and December (with conference calls throughout the year). The Board is comprised of healthcare professionals in a variety of disciplines (Rheumies, Ocular, Oral, Researchers), a disability attorney, caregivers of patients, and patients. The amazing staff of the Foundation joins for much of our meeting to present achievements and challenges and to discuss goals.
The 2017 spring meeting was particularly rewarding and I’m honored to be a member of the Board representing patients! In fact, it was so impressive that I want to share what the foundation has accomplished for us (the patient).
Continue reading “Sjögrens Foundation May Board Meeting — Impressive!”
I am so proud to lend my story for this major US news article! The Sjogrens Foundation was able to attract the attention of the Health and Wellness Editor and get Sjogrens in US News & World Report!
The name of the article is Sjogren’s Syndrome: The Most Common Autoimmune Condition You’ve Never Heard Of by Anna Miller of US News & World Report.
Continue reading “Sjogrens in US News & World Report”
I am thrilled that the Sjogrens Syndrome Foundation has asked me to be the keynote speaker at the 2017 Sjogrens National Patient Conference. I spoke during the Awards dinner at the Seattle conference last year, and I am honored to speak again to our East Coast Sjogrens peeps.
Are you attending the event? The conference is March 31st-April 1st in the Philadelphia/Cherry Hill area. I’d also like your input…
Continue reading “Keynote Speaker: 2017 Sjogrens National Patient Conference”
On November 7th my Rheumy called me to task and suggested I was in denial about the severity of my Sjogrens disease level. In fact, she challenged me with an email stating that the “long-term ostrich path is rocky” for the progression of the disease and further organ damage. If you read my last post on grief, you already know I was in a major relapse. Clearly, it was time to pull my head out of the sand and move to a more aggressive form of treatment. Last year we had discussed biologics as the next step, so I knew that it was time to begin my Rituxan and Sjogrens journey.
Before I agreed to move forward, I needed to have an in-depth drug conversation with my Rheumy and discuss the treatment experience with other patients. I had real anxiety about the treatment because once it’s in you, it is in you for months. To cut to the chase, I had my first Rituxan infusion on December 8th and my second on December 20th.
Continue reading “My Rituxan and Sjogrens Journey … Is it worth it?”