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Samantha

"Since I was diagnosed with Sjögren's, I have learned..."

 

 

 

 

Since I was diagnosed with Sjögren’s, I have learned that just because someone may look ok on the outside , doesn’t mean they are not struggling in some way. I learned not to judge a book by its cover and have more compassion.

My most difficult symptoms are joint pain, fatigue and blurred vision due to dry eyes.

Sjögren's has made me more grateful for the little things and for life in general. I don’t take anything for granted. I’ve had this since I was a teenager so I’ve had time to deal with it and accept it and learn what works for me.  Flares are very difficult but they eventually end . It’s made me a more positive person.  I try to be healthy in general since I can at Least control that (eating well, working out,walking ) . When I have a flare I try to rest , hot baths , do something I love with my family. My husband is very supportive and takes care of me.

I wish people knew that just because we may look fine, doesn’t mean we don’t struggle some days (especially during a flare!). Have patience and understanding for those with immune disorders . It’s not just “dry eyes”. It affects your entire body and the fatigue is no joke!!!

Given recent global events amid the coronavirus/COVID-19, it’s concerning to see that people don’t take it seriously, because they are healthy and think it won’t affect them. I worry how my body would react to it if I had it, so I’ve remained inside (along with my son ) since March 16th. I don’t even go to the store (nor does my 2 year old). My health as a mother and wife is my number 1 priority, as well as the health of my family. I think there are too many unknowns with this virus, so we must be cautious .  My husband is an essential worker so it’s a little nerve wracking.

My best Sjögren’s tip is to eat healthy, use eye drops (even though I hate them!! Lol), do what you love, work on self care, rest, and to find a doctor that truly listens .