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 Sjgoren’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.

Top News in Autoimmunity – Week of Dec. 12, 2018

Man left paralyzed from the nose down by rare autoimmune disorder

David Braham, a 40-year old man from the United Kingdom, came down with a bad case of food poisoning, which he believes was triggered by eating chicken curry. A few days later, he was in the hospital being put into an induced coma.

It turns out, the food poisoning had caused him to develop a rare autoimmune condition called Guillain-Barre Syndrome. This disorder causes the body’s immune system to attack its own nerves, leaving the patient paralyzed.

Braham is re-learning how to do basic tasks, such as walking, washing himself and brushing his teeth, and is happy that he has been able to return home to his family. Read more about his harrowing story here.

Purdue University developing new treatment options for autoimmune diseases

Purdue University researchers have developed a series of molecules to help provide symptom relief to those with autoimmune conditions.

Mark Cushman, a distinguished professor of medicinal chemistry at the university, was the lead researcher in the study. His research team found that the molecules are more effective than pharmaceuticals currently on the market at affecting cell signaling and inhibiting autoimmune reactions. They have also shown to produce less side effects than conventional treatments.

Read more about this exciting discovery here.

MSU student shares her story with Alopecia

Payton Bland, a freshman student at Minot State University (MSU) in North Dakota, shares her story of acceptance and confidence while living with Alopecia.

Alopecia is an autoimmune condition that causes the body to attack its own hair follicles. The result can be extensive hair loss. In the case of Alopecia Universalis, the patient loses 100% of the hair on their body.

Oftentimes, those affected by this disorder suffer from anxiety. Payton, however, is undeterred by her Alopecia. Her bald head might cause her to stand out on campus, but she also stands out because of her upbeat personality and positive attitude.

Payton has spoken with young girls living with the condition, to inspire and empower them that it’s nothing to be ashamed about. She credits her family and faith in helping her stay confident in who she is. Watch her heartening interview here.

Top News in Autoimmunity – Week of Dec. 5, 2018

Sjogren’s non-profit seeks applicants for research grants

The Sjogren’s Syndrome Foundation (SSF) is now accepting applications for research grants. Two distinct awards are being offered: the SSF Pilot Research Award for $25,000 and the SSF High Impact Research Award for $75,000. To view more details and apply, see the SSF website.

Trump administration proposes access barriers to drugs critical to autoimmune patients health

The American Autoimmune Related Diseases Association (AARDA) reports that the Trump administration has proposed a Medicare rule that allows for step therapy and prior authorization restrictions. The AARDA states that such a rule would interfere with the patient-physician relationship, and can result in delayed treatment, increased disease activity, loss of function, and potentially irreversible disease progression for Medicare beneficiaries. Read more here.

Sharing the Journey series provides tips on explaining lupus

The Lupus Foundation of America has published a blog series Sharing the Journey to highlight the perspectives and personal experiences of those who struggle with lupus each day. In the series’ latest installment, contributors describe how they explain lupus to family, friends, co-workers, and others. Read their compelling stories here.

MS Society of Canada launches Vitamin D recommendations for MS

The Multiple Sclerosis (MS) Society of Canada has released a report detailing Vitamin D recommendations for those living with MS for at-risk populations.

Vitamin D, dubbed the ‘sunshine vitamin’, is produced by our skin through sun exposure, but can also come from other sources such as food (eggs, fortified dairy products, and fish) and supplements. The Society has long funded research on the relationship between Vitamin D levels and MS. The recommendations have been summarized into two reports; one for researchers and healthcare professionals, and another for laypersons. Read more under the Society’s research news.