I was seeing a dermatologist for complications my doctors believe were related to my autoimmune disease. The resident came in first and asked about my rheumatological history. When I said I had Sjogren's--which is only one part of my complicated history--his comment was, you guessed it, "You Only Have Sjogren's". I could have strangled him with his stethoscope right there. Really? Only? Like he had any idea what that meant.
At that moment, I decided that I needed to speak up instead of reaching for his neck. If I had said yes, I would have been an accomplice in aiding and abetting ignorance. Playing into his ignorance that Sjogren's was not a serious, potentially multi-system, and disabling disease. So, I opened my big mouth trying to strike a balance between being polite and firm and decided to start educating. I informed him that "saying I only had Sjogren's is just not accurate" and I went on to outline some of the specifics of my illness and how it has affected my life. I included the fatigue, joint pain, eye pain, pulmonary problems, and, in my case, cranial neuropathies as well. He seemed to think Sjogren's was just the dryness disease. I almost laughed as I told him "I wish." I am hoping that hearing my story of the years until diagnosis (some painful irony that this doctor was with the same hospital which had never figured out my diagnosis) and the range of symptoms I possessed would change how this doctor viewed the disease and would treat his future patients.
I have heard other doctors and lay people make this type of statement before. Though I always found it troubling in the past I would have often said nothing. But I've decided educating everyone I can is a small thing I can do for others with Sjogren's. If patients with Sjogren's like me are not going to educate others, the widespread lack of awareness will certainly stay the same. People will continue just to associate Sjogren's with dry eyes and dry mouth--aliments that many consider a nuisance and can easily be managed (although we know even those symptoms are not so simple). They will not understand how you can be disabled when you have Sjogren's and assume you can function just like anyone else.
I'll give the resident some credit. I think after recovering from being stunned after my lecture, he seemed to understand this was something he probably should think more about in the future.
This whole exchange got me thinking and doing some additional research. I wondered what the standard literature said. A little bit of google research took me to the American College of Rheumatology Sjogren's Patient Education Page. Lo and behold, Sjogren's is made to sound like a very manageable disease where symptom relief mostly focuses around dry eyes and dry mouth. A few eye drops and you should be all set. Complications beyond dry eye and dry mouth are made to seem like rare anomalies and it would appear those with Sjogren's have to make very few life changes.
To quote them:
BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROME
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.
Rarely, patients may have complications related to inflammation in other body systems, including:
- Joint and muscle pain with fatigue
- Lung problems that may mimic pneumonia
- Abnormal liver and kidney function tests
- Skin rashes related to inflammation of small blood vessels
- Neurologic problems causing weakness and numbness
Well, lucky me I've got four of them. Most others I know who suffer from the condition have multiple symptoms and the list above is not even extensive (Check out this diagram from the Sjogren's Syndrome Foundation for a more comprehensive list of symptoms). The broader medical community still seems very much behind the times with autoimmune diseases. I'd say the burden for educating them and the broader public has to begin with us. If not us, who?