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?

Actor Ashton Kutcher reveals autoimmune diagnosis

Actor Ashton Kutcher reveals he was diagnosed with a rare autoimmune disease. (Photo by Robin L Marshall/Getty Images)

Actor-turned-venture capitalist Ashton Kutcher recently revealed that he was diagnosed with an autoimmune disease two years ago.

The That 70’s Show alum said that he was diagnosed with vasculitis, an autoimmune disease that causes the body’s immune system to attack its own blood vessels, leading them to swell and narrow. According to the John Hopkin’s Vasculitis Center, the symptoms of vasculitis vary greatly, depending on which blood vessels have been impacted and the inflammatory process involved. Some of the common symptoms of vasculitis include headaches, joint pain, fever, rashes, fatigue, weight loss, rapid pulse, cough, and frequent infections. However, the disease can also cause even more severe symptoms, like kidney and lung problems, stroke, aneurysms, gangrene, deafness, and blindness.

Kutcher said in a 2022 interview that vasculitis affected his vision, hearing, and sense of balance, showing that he had a more severe form of the disease. He commented, “You don’t really appreciate it until it’s gone, until you go, ‘I don’t know if I’m ever gonna be able to see again, I don’t know if I’m gonna be able to hear again, I don’t know if I’m going to be able to walk again.’”

According to Kutcher, it took him over a year to recover from his vasculitis flare-up. The actor acknowledged that while his vasculitis diagnosis put him on a “terrifying journey” he knows that he’s “lucky to be alive”.

Unfortunately, there is no known cure for vasculitis, and the exact cause of what leads the immune system to attack one’s blood vessels is unclear. However, treatments are available to help ease the symptoms, including steroids like Prednisone, chemotherapy drugs like Methotrexate, and immunosuppressants like Cytoxan. It’s unclear what exact treatment Kutcher received after his vasculitis diagnosis.

To learn more about vasculitis and read real patient stories, visit the Vasculitis Foundation website.

Actress with Lupus Spreads Awareness for Autoimmune Disease

In 2007, Maria Alejandra Hernandez was living her best life in New York City, working her dream job as an actress. However, she started to feel unwell, and generally tired and run down. She had a kidney biopsy done, but it didn’t lead to any answers. She recovered from the mystery illness, and went on to live her life.

Four years later at age 21, her health problems resurged with a vengeance.

“It started with a pain in my finger, I remember,” Hernandez explains. “I thought I probably bumped it or I’m just stressed out. It’s probably going to go away.”

However, the pain didn’t go away, and in fact continued to spread to her shoulders.

“The pain was so excruciating, I couldn’t even lift my hands,” she says. She was hospitalized for a month, while doctors performed a myriad of tests in an effort to diagnose the cause of her sudden pains.

She was eventually diagnosed with systemic lupus erythematosus. The autoimmune disease was causing her body’s own immune system to attack her joints, resulting in the unbearable pain in her fingers and shoulders. Shortly after, she started getting rashes on her face. Butterfly rash, which is a skin rash in the shape of a butterfly that appears across the nose and cheeks of lupus patients, is a hallmark symptom of the disease.

Hernandez admits that she knew nothing about lupus prior to being diagnosed. She explains, “I thought I could tell the doctor, okay, give me the medicine so I can just get better. Well, it doesn’t work that way!”

She recounts with emotion finding out that lupus is a life-long, chronic condition: “I remember one of the doctors telling to me that there was no cure; I felt like my life ended right there.”

While 90% of lupus patients are women, the symptoms can be completely different from person to person. Hernandez says that in addition to joint pain, fatigue, and skin rashes, she also experienced weight gain, hair loss, and kidney problems. At that point, she thought that her career as an actress would have to come to an end.

Lupus put a strain not just on Hernandez’ career, but on her relationship as well. At one point, the young woman told her husband that she likely wouldn’t be able to have children, and that he should find a new relationship to fulfill his dream of having kids.

“He said, ‘No way in hell!'” Hernandez laughs. Her husband stood by her side throughout her aggressive medical treatment. She now manages her symptoms with a combination of daily prescription medications and a healthy diet. Staying positive is also an important part of maintaining her mental health.

Hernandez said that her blood tests have shown promising results that her lupus is under control. As a result, she revealed that her and her husband are looking forward to starting a family of their own.

“For Warriors like myself, [becoming a parent] might take a little longer, but I’m not losing hope,” she declared. “If I hadn’t gone what I went through, I wouldn’t be here now, raising awareness [for lupus],” she said.

“Now, lupus doesn’t control me. But I’m using it to help [others].”

Maria can be found on Instagram at: @mariaalejandrahl. To learn more about Maria’s battle with lupus, visit the Today show YouTube channel.