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.
Jennifer Waddleton, 31, was working as a paramedic in emergency medical services when she was called to ground zero in New York City on September 11, 2001, after the devastating terrorist attacks on the twin towers. Waddleton is among an estimated 400,000 people who were exposed to toxic debris after the collapse of the towers.
At the time, Waddleton didn’t realize the impact that responding to the event had had on her physical and mental health. Now, however, things are different. She can barely stand for more than 30 minutes at a time or tolerate sunlight. She has brain lesions, her hair is falling out, and her teeth are deteriorating.
“My body is failing me at 51,” said Waddleton, who was diagnosed with cancer, chronic acid reflux, sinus issues, and post-traumatic stress disorder (PTSD). But Waddleton began to experience other symptoms that couldn’t be explained by these diagnoses, including crippling fatigue, chronic migraines, and difficulty swallowing. She knew something wasn’t right.
“In the back of my head, I always knew,” she said. “But everyone was like: ‘No, there’s nothing wrong with you. It’s all in your head. You need sleep, you work crazy hours. Stop complaining’.”
Despite dealing with medical gaslighting for years, Waddleton eventually had kidney failure, and doctors couldn’t deny her poor health any longer. She was diagnosed with systemic lupus erythematosus (SLE) in 2012, 11 years after responding to 9/11. Lupus occurs when the body’s own immune system attacks and damages its organs and tissues.
Before being diagnosed, Waddleton was concerned that her troubling symptoms were somehow related to her experience as a 9/11 responder, and if there were others out there experiencing the same thing. According to several research studies, Waddleton’s concerns are valid; autoimmune diseases do appear to be on the rise among 9/11 victims and first responders alike.
Autoimmune diseases may have been triggered among 9/11 victims as a result of exposure to toxic dust at the scene. Crystalline silica, a construction mineral and major component of the debris, is a noted risk factor for autoimmune disorders. Other chemicals found on-site, like organic hydrocarbon solvents and asbestos, have also been associated with immune dysfunction. A 2015 study found that for every month a first responder worked on the World Trade Center site, the risk of developing an autoimmune disease rose by 13%. A 2019 study based on over 43,000 World Trade Center Health Registry participants found that first responders with intense exposure to the toxic dust were almost twice as likely to develop systemic autoimmune diseases. The most frequently diagnosed autoimmune conditions were rheumatoidarthritis, Sjogren’s syndrome, lupus, myositis, mixed connective tissue disease, and scleroderma.
The same 2019 study also purported that PTSD may also be responsible for triggering autoimmune disorders among 9/11 victims and first responders. This confirms other research on the connection between chronic stress, adverse childhood experiences (ACEs), and autoimmune disease.
Many victims of 9/11 can have their health insurance covered or receive a financial payout from the September 11th Victim Compensation Fund and the World Trade Center Health Program. However, autoimmune diseases are not acknowledged by the compensation fund nor the health program. This means that those who suffer from autoimmune diseases are ineligible for free health care, and cannot receive compensation for their suffering. Most of the covered conditions on the list include acute injuries, lung conditions, cancer, and mental health issues.
Multiple petitions among 9/11 victims have requested to have autoimmune diseases added to the list of covered conditions, to no avail; the federal government has cited lack of sufficient evidence proving the link between autoimmunity and exposures from 9/11. Another issue is that autoimmune diseases may have a genetic component, making it even more difficult to prove that the development of these conditions was caused by exposures during 9/11, and not the patients’ own genetic makeup.
So for now, first responders like Waddleton will have to wait until the research catches up. Waddleton manages a Facebook group for 9/11 emergency responders who have suffered from autoimmune diseases after the event, and has seen first-hand the effects that it’s had on these patients.
“It’s incredibly frustrating,” she said. “They left everyone else hanging. This wasn’t supposed to be my life.”
If you have a chronic illness, you’ll know all too well the feeling of going about your day when you’ve had poor sleep. That feeling of mental grogginess, accompanied by the physical aches…it’s not fun. Sleep performs several essential functions beyond just improving your mood, memory, and mental clarity. Sleep actually has important physiological impacts on your body as well. Read on to learn the top three reasons why sleep is especially important for chronic illness patients.
1. Decrease Inflammation
According to the Division of Sleep Medicine at Harvard Medical School, there is a link between lack of sleep and the risk of developing certain diseases and health problems. For example, sleep deprivation studies have shown that when healthy research study participants were deprived of adequate sleep levels, they experienced increased blood pressure and inflammation levels, in addition to impaired blood glucose control. These symptoms actually mimic the impact of increased stress on the body. Other studies have found that prolonged sleep deficiency can lead to chronic, body-wide low-grade inflammation and is associated with various diseases that have an inflammatory component, such as diabetes.
As many of you know, increased inflammation and an abnormal inflammatory response are what underlie many chronic illnesses, including autoimmune disease. As a result, it’s important to get enough sleep to ensure that your inflammation levels stay in-check.
2. Prevent Weight Gain & Hormone Imbalances
In addition to increasing your inflammation, studies have shown that a lack of sleep can also lead to weight gain. For instance, people who habitually sleep less than six hours per night are much more likely to have a higher than average body mass index (BMI), and people who sleep eight hours have the lowest BMI. For this reason, sleep deprivation is now considered a possible risk factor for obesity.
Poor sleep increases cortisol levels, a stress hormone that can increase visceral (mid-section) body fat storage. It is associated with increases in insulin as well; insulin is a hormone that regulates glucose processing and also promotes fat storage. A lack of sleep can also be the culprit for lower levels of leptin, a hormone that alerts the brain that it has had enough to eat, and higher levels of ghrelin, a biochemical that stimulates one’s appetite. This means that those with poor sleep may have intense food cravings, and feel hungry despite consuming enough calories.
3. Strengthen Immune Memory
According to the Sleep Foundation, sleep helps to strengthen immune memory, which is the immune system’s ability to remember how to recognize and react to dangerous antigens. With autoimmune disease, patients’ immune systems incorrectly attack their own healthy tissues and cells. As a result, autoimmune patients have immune systems with poor immune memory. Getting adequate sleep levels can help to strengthen your immune system’s ability to differentiate between your own tissues and foreign invaders.
Although the exact reasons why sleep helps your body to improve its immune memory are unknown, there are several hypotheses. For example, it’s believed that because breathing and muscle activity slow down while you’re asleep, your body now has freed up the energy for the immune system to perform these critical immune-memory tasks.
Another way that sleep helps your immune system is through the production of melatonin, a sleep-promoting hormone. Melatonin is known to have anti-inflammatory effects by scavenging toxic free radicals, which cause tissue destruction during an inflammatory reaction. Melatonin also reduces the over-expression of a variety of pro-inflammatory cytokines, which can cause a cytokine storm in one’s body. There is also some evidence that melatonin inhibits the production of adhesion molecules, which are responsible for causing inflammatory white blood cells to stick to endothelial cells in one’s connective tissue.
How Much is Enough?
By now, you may be convinced that you need more sleep…but how much shut eye is really enough? According to the Sleep Foundation’s guidelines, adults aged 18-64 need between 7 to 9 hours of sleep every night. Adults over the age of 65 are recommended to get a similar amount of sleep – between 7 to 8 hours – each night. Infants, children and teens need even more hours of sleep to sustain their growth and development.
Sleep Problems and Chronic Illness
Having a chronic illness like an autoimmune disease can directly impact your ability to get quality sleep. For instance, many autoimmune patients suffer from chronic pain, which makes it challenging to fall asleep or to stay asleep. In fact, two-thirds of patients with chronic pain conditions report experiencing sleep disorders like insomnia.
I myself have Sjogren’s Syndrome, which, in addition to chronic joint pain, causes severe dry eyes and dry mouth. In my earliest days of living with Sjogren’s, I had difficulty staying asleep, since I would constantly wake up every few hours to chug bucketloads of water to relieve my chronically dry mouth, go to the bathroom (as a result of all the water I was drinking!) and put in eyedrops to relieve my severely dry eyes. Fortunately, I was able to find relief for my dryness symptoms through prescription and over-the-counter products, which made it possible for me to get a good night’s rest, without having to constantly wake up.
Chronic illnesses can also result in mood disorders like depression and anxiety, which can in turn make falling asleep difficult. If you’re staying up late at night due to incessant worrying about your health problems, it’s important to get treatment for your mental health conditions from a provider who understands the realities of living with a chronic illness.
Thanks for stopping by the Autoimmune Warrior blog! Do you have difficulty sleeping with your chronic illness? Let us know in the comments below!