April is Sjögren’s Awareness Month

Raise Awareness About Sjögren’s Syndrome by Sharing Your Story

April is Sjögren’s Syndrome awareness month! To raise awareness about this autoimmune disease, the Sjögren’s Syndrome Foundation (SSF) will be posting a daily story about someone affected by the disease on their social media platforms with the hashtag #ThisisSjogren’s. To participate in the campaign, fill out and submit the questionnaire at the following link along with a photo: https://info.sjogrens.org/conquering-sjogrens.

Here’s my questionnaire:

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Name: Isabel

Current age: 26

Age when diagnosed: 20

City/State: San Diego, California

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): Marketing Coordinator

What are your top three most difficult symptoms to live with: Eye/mouth dryness, joint pain, fatigue

What is your most difficult symptom that people don’t understand: Brain fog – it’s an invisible symptom, and it’s hard to explain

What do you wish people knew about your Sjögren’s: 

That the condition involves the whole body, and it’s more than just eye and mouth dryness (and even those can be destructive symptoms).

What’s your best Sjögren’s tip:
Find a positive outlet in which you can discuss your disease – whether that’s a support group, talking with a loved one or keeping a journal. I write about Sjögren’s on my blog, autoimmunewarrior.org, and use it to connect with others who have the disease.

When your doctor doesn’t believe you

Have you ever complained to your family physician about your symptoms, only to be totally dismissed?

Whether you’ve been diagnosed with an autoimmune disease or not, your ailments may be ignored or written off as ‘not a big deal’ by a health care professional.

This has often happened to me over the course of the last 7+ years of having an autoimmune condition. For example, before I was even diagnosed with Sjögren’s Syndrome, I was told that my symptoms, including joint pain, eye and mouth dryness, recurrent ulcers, yeast infections, and fatigue had a plausible, non-disease related cause, and weren’t really a ‘big deal’ anyway.

Even worse, other health care professionals told me my symptoms were nothing more than a figment of my imagination.

Worse yet, after many unproductive visits to doctors’ offices and labs, with little to no explanation for what could be wrong, I actually started to believe…could I be imagining this?

One family MD, for example, told me my joint pain was probably a result of ‘texting too much’. As a fresh-faced teenager, I probably didn’t look like someone who could be experiencing debilitating joint pain. But that shouldn’t matter. In fact, juvenile rheumatoid arthritis, affecting those 16 years and younger, affects over 50,000 people in the United States alone.

Another time, I needed a referral to see a rheumatologist. The nurse who checked me in asked, “How does someone your age need a rheumatologist? Did you wear high heels too much in high school?” Not only was her questioning intrusive, rude, and uncalled for, it invalidated my experience as a patient with a chronic health condition.

As a result, I became even more reticent to explain my health issues with the people who I should be speaking with the most…health care professionals! And sadly, this is too often the experience for others living with autoimmune or other chronic health conditions.

The Sjögren’s Syndrome Foundation recently shared a tip on social media, stating, “Remember that just because a symptom can’t be seen easily, it is still important. If you feel that a physician dismisses your Sjögren’s symptoms, help educate them and/or find another physician”. Many commenters responded by lamenting their own experiences with not being taken seriously by their healthcare providers. One woman commented, “My dentist keeps telling me to stop making excuses for my bad teeth”, referring to the fact that Sjögren’s often has a devastating impact on patients’ teeth, despite maintaining a solid oral hygiene routine.

If I had to give one piece of advice for anyone with chronic health problems, diagnosed or not, I would say to never give up. If your physician doesn’t take you seriously, move on. This doesn’t mean that you don’t listen to your doctor’s medical advice; this means that if they tell you it’s ‘all in your head’, or ‘it can’t be that bad, can it?’, and you know they are wrong, then you stand your ground.

Remember, you are the best advocate for your own health! Check out these helpful tips published by WebMD about talking to your doctor.