(Note: As mentioned in my last story, Halsey uses both she/they pronouns.)
A couple of weeks ago, Halsey posted an apology to fans on their Instagram story, noting that they would be slowing down to manage with some health struggles before embarking on their summer tour. She mentioned she was “dealing with some new challenges” and said “chronic illness is a complex mystery.” I think everyone assumed it was endometriosis-related, because Halsey has been open about that condition. But they are actually dealing with even more health issues and just revealed they were recently diagnosed with FOUR syndromes and significant allergies.
Halsey is getting candid about the health issues they’ve been experiencing since giving birth to their first baby last July.
The “Without Me” singer, 27, posted a series of videos to her Instagram Story on Tuesday explaining some of the symptoms they’ve experienced and syndromes she’s been diagnosed with.
“So, I know that a lot of you guys have been wondering what’s going on with my health, and some of you saw a TikTok yesterday basically confirming that I’m allergic to literally everything,” they said.
“Obviously my health has changed a lot since I got pregnant and gave birth. I started getting really, really, really sick,” she continued, adding that they’ve been “kind of” sick for “most of [their] adult life, but it started getting really bad.”
“I was hospitalized for anaphylaxis a few times and had some other stuff going on. Basically, after seeing like 100,000 doctors, I got diagnosed with Ehlers-Danlos syndrome, Sjogren’s syndrome, Mast Cell Activation Syndrome (MCAS), POTS (postural orthostatic tachycardia syndrome),” Halsey — who is wearing a heart monitor — said, noting that they’re still looking for the “root cause of some of these things.”
Ehlers-Danlos syndrome is a group of inherited disorders that affect the body’s connective tissues, including skin, joints, and blood vessels, per Mayo Clinic. With Sjogren’s syndrome, which is classified as an autoimmune disorder, the body attacks the glands that make tears and saliva, but can also damage other parts of the body, including the joints, thyroid, kidneys, liver, and more.
MCAS is a condition in which “mast cells in your body release too much of a substance that causes allergy symptoms,” according to Healthline, while POTS is a condition that affects blood flow, and can cause lightheadedness, rapid heartbeat, and even fainting upon standing up, per Cleveland Clinic.
“It could be potentially another autoimmune disease, and I’ve known I’ve had autoimmune issues for most of my life, especially having endometriosis, but it’s kind of been exacerbated since I had Ender,” the three-time Grammy Award nominee explained.
Halsey went on to tell their followers not to worry and that they’re on a treatment plan, adding that they’re in rehearsals for tour and “really excited and really confident” they can do it in a way that’s “healthy” and can perform their best for fans.
Halsey shared this news via Instagram Stories again. I watched with some trepidation because it was clear she’d be sharing something serious and she’d looked a bit different in recent pictures, but my jaw actually dropped when I saw the heart monitor and she listed the syndromes she’d been diagnosed with. They mentioned they’d been feeling sick for most of their adult life, but their symptoms changed after giving birth last year. And then they saw a lot of doctors, got tests and were diagnosed with these four syndromes and determined to be allergic to “everything.” And “everything” does seem accurate because she posted a pic of her back with the allergy test and pretty much every inch of it was lit up.
I’ve never heard of any of those syndromes before. I’m not sure if that means they’re obscure or if my knowledge in that area is just very limited. Four sounds like a lot though. And while there does seem to be some overlap in the effects and symptoms, overall it just sounds like nearly every aspect of their body is affected. That sounds really hard and it must have been frustrating to feel sick and not know why for a long time. Hopefully having actual diagnoses and a treatment plan now will bring Halsey some relief and have her feeling better soon. She is still planning to proceed with the tour and I remain impressed that she’s still focused on that despite feeling so bad.
Photos credit: Avalon.red, Instar and via Instagram
Pregnancy really raises Cain with the body. I developed allergies to perfumes and pollen after I had my daughter. Poor Halsey. They certainly have a bucket load of health issues. I’m glad they are getting the help they need to lead a healthy life.
I’m right there with ya. A year after having my two kids back to back I was bruising and itching like crazy and none of the 5 specialists I saw could figure it out. Ended up finding a Functional Medicine doctor who actually looks at the body as a whole unit, and I was having hormone related autoimmune issues and gut issues. Basically taking a probiotic healed my gut and the bruising and itching stopped. Still have some other issues but I hope poor Halsey can find a really good doctor who can help. Being a woman is hard!
I have primary Sjogren’s Syndrome, which is the more systemic version and a lot like Lupus. I’m allergic to a lot of food as well and it’s a challenge. When trying to conceive (didn’t work) we were warned that autoimmune issues tend to go into remission during pregnancy and then into a mega flare-up post-partum. I have to say this makes me feel a little bit better about things not working out for us. I hope they get some relief and stability soon.
I have primary Sjogren’s Syndrome too. I conceived naturally and I believe it was because I had been AIP for over a year. However, my Sjogren’s did not go into remission during pregnancy. I’m SSA and SSB positive (not sure what you are) and if you’re SSA positive you MUST have ultrasounds from 14 weeks – 32 weeks to check for neonatal heart block. Thankfully my daughter was fine.
I wish more people knew about Sjogren’s Syndrome. It’s more than just “dry eyes and dry mouth.” It’s extremely similar to Lupus. I’ve had to learn to say no to a lot of things even though I look perfectly “normal.”
Congrats on your daughter and thank goodness she didn’t have heart block. I wish more people knew about SS too, even many health care providers are unfamiliar. And I totally hear you about learning to say no and navigating life with an invisible illness. I’ve had to explain ‘spoon theory’ to quite a few people.
On my endless health journey, for a diagnosis they thought I had Sjogrens syndrome, and yes, it feels like hardly anyone knows about these illnesses. I’ve learned all of them and more from disability twitter which has been so supportive and helpful to me. I’m currently home after hysterectomy from severe endometriosis and fibroids ( my uterus was ATTACHED to my colon) and the relief and rage I feel are pretty equal. Men’s medicine-which is all fucking medicine, lets be honest- is NOT kind to women, does not study women, will not take women’s pain and symptoms seriously-shall I go on?
I think Halsey is AMAZING for being so honest about her own health journey and is going to teach so many women and help them find their own diagnosis for these things. Endometriosis can cause clusters of auto-immune diseases and we still don’t have any way to diagnose it until you open a woman up. I volunteered in the hospital to take part in a study to help find markers, and I’m so blessed with my health care, as Halsey is, but I mourn for the women who don’t have our resources. Our healthcare system is f*cked and god forbid you are a black or brown woman in it. We HAVE to change this.
Auto-immune diseases and pregnancy are not a great combination. I have picked up two new auto-immune diseases and am still recovering after giving birth 7 years ago. The hormones just cause reactions all over the place. I wish Halsey a lot of strength and hope they are able to enjoy the good days.
I know 4 people with Ehlers-Danlos and 3 of them also have been diagnosed with POTS. From what I’ve heard, the 2 syndromes usually go hand-in-hand.
Yes, and the same with MCAS. I have a close relative with all of these and have wondered if I might too (EDS is genetic), so I’ve been reading up.
I know of a few people with Ehlers-Danlos syndrome. And I know of someone who died from complications from it. It affects every part of the body. It’s one of those disorders that can take people a lifetime to get diagnosed with. And the crappy part of autoimmune disorders is that they usually run in tandem with one another so if you have one the possibility of you having others is high. Allergies are the most common autoimmune disorder and can be a sign of other disorders. Glad she is talking about it so openly so that if others are experiencing similar issues they will feel prompted to get diagnosed.
I feel so sorry for them, especially with this happening on the heels of having a child. The body can react this way to pregnancy if there are already imbalances, and childbirth/postpartum can be like pouring gas on a fire. For some folks who are already symptomatic, pregnancy helps calm these conditions, but it’s a gamble. I’ve lived for over a decade with MCAS, EDS, and some other chronic conditions with autoimmune-like symptoms and have not had children out of fear that pregnancy will set off a cascade of additional problems.
Conditions like this are always referred to as “syndromes” because the medical establishment does not really know what the cause is, they can only discern the cluster of symptoms and the possible causes. Environmental factors can play a big role (mold, parasites, gut imbalances, lyme disease, etc.). This is why many of us turn to alternative or functional medicine, which looks at the whole body. However, having an eye out for snake oil salespeople is essential. When you feel terrible, anyone peddling hope seems like a ray of light, when oftentimes they are there to part you with your $.
I’m glad Halsey has resources and support. I wish them well, as so many with POTS, EDS, MCAS, CIRS, etc. struggle for long periods of time. If this is your first time hearing any of these acronyms, count yourself lucky. I hope you never have to think about them.
I recognize all of this <3 FWIW, my symptoms went into remission during pregnancy and afterwards, but flared again years later due to other factors–it's a complex journey. I hope you can make a decision about whether or not to be pregnant/have children that feels good and right to you.
It sounds like she is getting excellent medical care and I hope she feels better soon. It is not uncommon for people to develop auto immune disease after giving birth. The hormonal changes can wreck havoc on your immune system. She likely had the genetic predisposition and childbirth put her body over the edge.
I wonder if she has breast implants. Lots of people are having issues from them causing auto-immune diseases and a wide variety of other health issues. If I were them I would be having them taken out to see.
Was just thinking the same thing. I know several women who had them removed to improve their overall health issues.
I have EDS, MCAS, and POTS, too. The three syndromes are actually referred to as a triad, because while someone can have only one it’s much more common to have them together. And they’re not the first celebrity to announce they have Ehlers-Danlos Syndrome — Sia, Yvie Oddly, Lena Dunham, Jameela Jamil, and several others have it, too. Doctors used to refer to it as a rare disorder, but it was really just rarely diagnosed because doctors didn’t know what it was — and thanks to better research and education they recognize it now.
I have primary lupus with secondary Sjogren’s, it’s a very uncomfortable and annoying disease. They are so right when they say “chronic illness is a complex mystery.” So many of these diseases have no specific tests that definitively lead to a diagnosis so many people are gaslit by doctors for many years until these diseases do real damage to the body. Glad that Halsey was able to get some answers and continues to advocate for themself. By talking about this openly, they will help other people be strong and fight for a proper diagnosis.
Pregnancy isn’t just a nine month thing. I my daughter is three now and I’m noticing what I thought was anxiety or depression could be a thyroid or autoimmune issue. I’m still figuring it out. But I never felt like “myself” since.
Poor Halsey. I have MS (multiple sclerosis), hypothyroidism, and lichen sclerosus. If you have one autoimmune disease, you’re much more likely than the average person to get another. My derm told me that they don’t know if lichen sclerosus is autoimmune and they’re still investigating. I said if I have it, then trust me, it’s autoimmune! My sister has ulcerative colitis, drug induced lupus (from a drug she took for the UC), and I forget her third autoimmune disease – maybe hypothyroidism as well. But we consider the MS and the UC our “main” diseases.
I think this massive increase in autoimmune diseases vs. 50 years ago is due to all of the crap in our food, water, air, etc., and of course it hits women far more frequently than men, so no one cares. Makes me so angry.
I have a similar combination of issues, including endometriosis and MCAS. As others posting here know, autoimmune conditions disproportionately affect women and are, predictably, often dismissed, under-researched, and underfunded. That said, Dr. Naviaux’s Cell Danger Response work gives me hope.