Autoimmune Disease Sucks…And You Can Handle It

I’m currently reading the book Diabetes Sucks And You Can Handle It by Dr. Mark Heyman, a psychologist who lives with Type 1 Diabetes (T1D). For those of you who don’t know, T1D is an autoimmune disease in which the immune system destroys the pancreatic cells that produce insulin. 

Although I don’t have type 1 diabetes myself, I started reading the book because I work for a continuous glucose monitoring company, which produces medical devices for those with diabetes to help them monitor their glucose levels. Reading about diabetes has given me some insight on what it’s like to live with this challenging chronic illness.

As I was reading Dr. Heyman’s book, I realized that there are a lot of similarities between living with T1D and other autoimmune conditions, like Sjogren’s Syndrome and Hidradenitis Suppurativa, which I live with. Being diagnosed with any kind of chronic health condition can be overwhelming, especially at first. You may think, ‘What did I do to deserve this?’ or other unhelpful thoughts. Even after the initial shock of your diagnosis wears off, there is the ongoing challenge of having to live your ‘new normal’ of life with a disease. It can also impact your ability to do the work and activities that you love.

Dr. Heyman says that the first step to living well with diabetes is to first acknowledge that IT SUCKS. This may seem counterintuitive…after all, if you’re struggling with living with an illness, thinking about how much it sucks would only make things worse, right? But Dr. Heyman says that oftentimes, those with T1D try to ignore their disease, or to think positive thoughts only – this just doesn’t work. You can’t ignore your health problems as if that’ll make them going away. And trying to force yourself to only think positively is basically the definition of toxic positivity.

As Dr. Heyman explains, the best way to live well with diabetes is to acknowledge that although it sucks, you can handle it. Here is a brief excerpt from the boook:

You can handle T1D because you have T1D. I know this sounds like circular logic, but it isn’t. Diabetes is demanding. It requires a lot from you. And you are doing it. You may not be perfect, and it may not feel like you’re doing a great job at handling it. Feeling overwhelmed, and burned out are not signs that you can’t handle T1D. The fact that you’re still living your life and want to keep improving is strong evidence that you can handle the challenging parts of diabetes because that is exactly what you’ve been doing since being diagnosed.

I have never met anyone with T1D who isn’t stronger in some way because of diabetes. You know that managing this condition day in and day out means always being on your toes. You have to make important decisions about your health, pivot your strategy regularly, and keep going, no matter what. You are already doing this.

Sometimes it may feel like you’re not doing a perfect job, and of course, there is always room for improvement. But the reality is T1D has made you stronger. You have to be resilient to survive with diabetes. The fact that you live with T1D proves you are strong. I hope you see it too.

I found this passage to be pretty relatable as someone managing multiple chronic illnesses. You may sometimes feel overburdened by your disease, but at the same time, you are made stronger by the challenges it has put you through. Maybe you’ve also become more conscientious of your health than before you were diagnosed, or it’s led you to re-prioritize your life to make space for only the things that you truly love and care about. Seeing it through this perspective doesn’t mean ignoring how hard it is to live with a disease. Instead, it’s about acknowledging how strong YOU have become in the process of managing life with a disease.

Let us know in the comments below…how has living life with a chronic illness made you stronger or more resilient?

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.

9/11 Survivors May Be At Greater Risk of Developing Autoimmune Diseases

Jennifer Waddleton, 51, is suffering from an autoimmune disease after serving as a 9/11 first responder. Image courtesy of NBC news.

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 rheumatoid arthritis, 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.”

To read more about this story, visit the NBC news website.