Halsey Shares Sjögren’s, Ehlers-Danlos Diagnosis

Halsey has shared that she’s been diagnosed with several chronic health conditions. (Photo by Nina Prommer, courtesy of Rolling Stone Magazine)

Halsey recently took to social media to share that she’s been diagnosed with several chronic health conditions.

The Grammy award-winning singer-songwriter, who was recently hospitalized for anaphylaxis — a severe allergic reaction — said that her hospitalization and subsequent doctor’s appointments led to her being diagnosed with several chronic health conditions, including Sjögren’s Syndrome, Ehlers-Danlos syndrome, mast cell activation syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS).

“My health has changed a lot since I got pregnant and gave birth,” the 27-year-old mom-of-one explained. “I started getting really, really, really sick — I’ve been kind of sick most of my adult life, but it started getting really bad [after pregnancy],” she said.

Sjögren’s Syndrome is an autoimmune disease in which the immune system attacks the body’s own exocrine (or moisture-producing) glands. Ehlers-Danlos syndrome is a group of connective tissue disorders that impact the skin, bones, blood vessels, organs, and other tissues. Mast cell activation syndrome occurs when the body releases too much of certain types of chemicals, such as histamines, in the body, resulting in repeated allergic or anaphylaxis episodes. POTS is a blood circulation disorder of the autonomic nervous system.

Halsey has previously shared details about her health struggles, including her battle with endometriosis. Back in 2017, she underwent multiple surgeries to help her with the condition.

She commented, “For those of you who have followed this battle of mine or who may suffer with it yourself, you know the extremes to which it can be mentally exhausting and physically painful.”

Halsey says she won’t let her health conditions stop her from living a full life or having a successful career, however. “If you suffer from chronic pain or a debilitating disease, please know that I have found time to live a crazy, wild, rewarding life AND balance my treatment and I hope so much in my heart that you can too,” she said.

What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.