Living with Sjogren’s Syndrome (How I Have Learned to Cope With an Auto-Immune Disorder)
When I registered for the COVID-19 vaccine, I declared my auto – immune condition. That disorder was Sjogren ’s (SHOW-grins) syndrome.
I needed to get medical clearance from my doctor and it was understandable. It was to find out any contraindication and know the safe vaccine for me. My concern was that it had been more than 10 years since I last consulted with a Rheumatologist. I could not even remember my doctor’s name.
My other doctors said that I could do a teleconsult with a rheumatologist to discuss my case. I was able contact RNL Medical and Diagnostic Center and they referred me to one. The Rheumatologist and I had a lengthy conversation and I got my medical clearance. She also said that I could avail of any vaccine available.
I have accepted the fact that this condition is not going to go away. So, for me, there has not been any reason for a follow up consultation over the years. I am a regular at my Opthalmologist’s clinic because of eye issues, some of which maybe related to Sjogren’s. After the pandemic, I resolve to have a face-to-face consultation.
What is Sjogren's Syndrome?
Some of my days are better than others. On days when I have so much discomfort, I am reminded that I have Sjogren’s. I try so hard to ignore and not dwell on it. When I try to explain my discomfort, I get that curious look on their faces.
Chances are you have not heard of this auto-immune disease.
Sjogren’s syndrome was named after the Swedish doctor, Henrik Sjögren. He discovered it in the early 1900s.
It is an auto-immune disease where the immune system attacks the body’s moisture producing glands.
The cause is unknown. Some studies show that Sjogren’s is a common disease although few people know about it. It also usually takes several years from the time the symptoms appear to the time of diagnosis.
There are medical studies that say between 400,000 and 3.1. million adults have Sjogren’s syndrome. Symptoms usually appear in the late 40s but persons of any age can get affected. This disorder affects women 10 times as men.
Take the case of Venus Williams, a great tennis champion and seven times Grand Slam Winner. She started experiencing symptoms in 2004. In 2011, doctors diagnosed that she had Sjogren’s syndrome. She pulled out of the 2011 U.S. Open due to fatigue-related reasons.
The Beginning
In 2006, I began experiencing some discomfort in my eyes. The eye area felt swollen. There were abnormal secretions, and my eyes were dry and gritty. I consulted our company doctor who advised the application of antibiotic eye drops. I felt better after a week but I was on and off antibiotics for quite some time. The condition persisted.
I started to research about dry eyes and came across the term Sjogren’s syndrome. I noticed that I also had the other symptoms mentioned in my readings. These were dry mouth, eyes that felt gritty, fatigue, a change in taste, joint pain, and sensitivity to light.
There were other symptoms related to Sjogren’s. But at that time, those were the ones that I was experiencing.
I went back to our company doctor to discuss my research. He then recommended a consultation with a rheumatologist.
It was the beginning of an arduous journey for me. It took about two years before I was able to find out what was wrong with me.
The Tests
There are some tests to determine if one has Sjogren’s Syndrome.
I had to go through some of them.
Medications
The doctor prescribed eye drops and other medicines to decrease inflammation. He also recommended meds to increase the production of saliva.
We also discussed about home remedies.
The Journey Begins
This life-changing condition made me realize that my real journey had begun. I needed to make adjustments to cope with the fatigue, the pain, and discomfort.
To manage my condition, I observe the following remedies but admit that I am also guilty of being inconsistent.
What Have I Learned?
Listen to your body.
I began researching when the discomfort became unbearable. I initiated discussions with our company doctor. Otherwise, it would have taken me longer to know.
Accept that there are situations that you cannot eliminate but only manage.
There were moments when I feel so frustrated. I needed to stop, reflect, and keep the faith.
Follow the advice of medical experts and have an open mind.
By following doctors’ recommendations and adopting a simple health regimen, I am able to live a normal life.
It is not easy. But when I think that there are people who suffer more debilitating and terminal diseases, I am reminded that my condition is nothing compared to what they are going through.
If you or anyone you know experience the symptoms of Sjogren’s, consult a doctor immediately.
Let’s keep the conversation going.
