Chronic Pain – Autoimmune Warrior

Celine Dion Reveals Stiff Person Syndrome Diagnosis

Celine Dion performing during her Las Vegas residency. Image courtesy of CNN.

Decorated Canadian singer-songwriter Celine Dion reveals she was recently diagnosed with a rare neurological autoimmune disorder called Stiff Person Syndrome. The diagnosis has lead her to cancel her summer 2023 shows, as well as re-schedule others to 2024.

According to Yale Medicine, Stiff Person Syndrome is believed to be an autoimmune reaction that occurs when the body’s own immune system attacks and destroys a vital protein called Glutamic Acid Decarboxylase (GAD). This protein is responsible for making a substance called gamma-aminobutyric acid (GABA), which helps to regulate motor neuron cells, and ensure they’re not over-active.

People with low levels of GABA have neurons that continuously fire, even when they’re not supposed to. This results in debilitating symptoms like violent muscle spasms, muscle stiffening in the torso and limbs, and difficulty with walking and movement. GABA also helps to regulate symptoms of depression and anxiety, so those with Stiff Person Syndrome are at a higher risk for developing these mental health conditions.

The 54-year-old Grammy award-winning artist has said that the condition has had a profound impact on her life, commenting: “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

Getting diagnosed with Stiff Person Syndrome can be a challenge, since the symptoms can mimic many other neurological health conditions, like multiple sclerosis, Parkinson’s disease, fibromyalgia, and more. Patients typically undergo a thorough examination, such as blood tests and spinal fluid tests, to find elevated levels of anti-GAD antibodies, in order to get diagnosed.

Being diagnosed was not a straightforward process for Dion herself. “While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said.

Although anyone can develop Stiff Person Syndrome, the National Organization for Rare Disorders reports that adults ages 30 to 60 are most commonly diagnosed with the condition. The condition is considered rare, with only one in a million individuals being diagnosed with SPS among the general population.

There is no cure for Stiff Person Syndrome, but treatments like steroids to control inflammation, plus the use of sedatives and muscle relaxants to control muscle spasms, can help. Sometimes Stiff Person Syndrome patients are also prescribed immunotherapies to help calm an over-active immune system that’s destroying their GAD proteins.

In an emotional video on her Instagram, Dion said, “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit it’s been a struggle.”

To learn more about Stiff Person Syndrome, visit the SPS Research Foundation’s website.

Podcasts Every Chronic Illness Patient Should Listen to

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Back in 2019, I wrote a blog post about my favorite autoimmune disease YouTubers. These are YouTube channels that I personally follow as they document life with a chronic illness.

As a follow-up to that blog post, I wanted to share my favorite podcasts on the topic of managing life with a chronic illness. Although I still do watch YouTube videos fairly frequently, I also enjoy listening to podcasts since it’s so convenient to tune into a podcast while I’m working, doing chores, driving etc. without having to watch something visual.

So, without further ado, here’s my list of chronic illness podcasts that I enjoy listening to!

1. The Chronic Illness Therapist

The Chronic Illness Therapist is a podcast run by Destiny Winters, a licensed therapist in the Atlanta, Georgia area. Destiny has several chronic illnesses herself, including Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), and Mass Cell Activation Syndrome (MCAS). Since she’s both a therapist and a chronic illness patient herself, Destiny understands the impact that managing an illness can have on a patient’s mental health.

As part of her podcast, she delves into a number of challenges that chronic illness patients face, including:

Medical gaslighting and questioning one’s own sanity
Lack of support or understanding from family and friends
Coping with pain and other difficult symptoms
How to live a meaningful and full life while battling illness
Adverse childhood experiences and the mind-body connection
Grief and acceptance

I have found all of these topics to be relevant to my own life, and I think that many readers would find the same. Plus, I highly appreciate her perspective as a therapist and as a patient, because not many people have both the academic and real-life expertise of both of these roles!

2. Sjogren’s Strong

Sjogren’s Strong is a podcast co-hosted by Lupe, a patient living with the autoimmune condition Sjogren’s Syndrome, and her partner Brian. I first learned about this podcast via their blog, after I was first diagnosed with Sjogren’s myself and was looking for information from other patients. The podcast delves into many subjects specific to living with Sjogren’s Syndrome, such as:

Managing common symptoms, like dry eyes, dry mouth, joint pain, fatigue, and brain fog
Sjogren’s medications, treatments, and medical insurance
Living an active lifestyle with a chronic illness

Although the podcast is clearly specific to Sjogren’s, I think it’s valuable for many chronic illness patients, such as those with Rheumatoid Arthritis and Lupus.

3. The Chronic Ills

The Chronic Ills podcast is co-hosted by Alina and Angelica, two Australian women who talk about living with a chronic illness as young adults in their twenties. Some of the topics they discuss in their podcast episodes include:

Body image with chronic illness
Medication and alternative therapies
The cost of being ill
Living with a chronic illness and anxiety about the global pandemic
Navigating relationships and friendships with a chronic illness
The portrayal of disability in the media

Alina and Angelica have had very different experiences as a chronic illness patients; one of them experienced becoming ill gradually, while the other had a sudden onset of their symptoms. What I like is that they show that not all cases are alike, and that every patient’s story is unique.

Those are the top three chronic illness podcasts that I’m listening to at the moment! Do you have any Spotify podcasts that you would recommend? Let us know in the comments below.

Autoimmune Disease Sucks…And You Can Handle It

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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?