As Autoimmune Disease Awareness Month comes to a close, I thought I’d share what my experience is like as someone who lives and works with an autoimmune liver disease every day. For many, being diagnosed with an autoimmune disease can feel scary and confusing, but I am living proof that professionals in all fields, including entertainment and broadcasting, can make it work and learn to manage their symptoms to live a happy and fulfilling life.
Key Takeaways:
- Autoimmune diseases affect millions of Americans and are difficult to diagnose.
- Each autoimmune disease has its own set of symptoms which can be challenging to identify and manage.
- Educating yourself and advocating for yourself are key in understanding your symptoms and getting your needs met by medical professionals.
- Connecting with others who are experiencing similar health concerns can build your community and provide the support you need.
What is an autoimmune disease?
We’ve all heard of them, but unless you have received an official diagnosis, you may not really know what an autoimmune disease actually is. An autoimmune disease can happen when your immune system is overactive, causing it to attack and damage its own tissues. Basically, your immune system can’t tell the difference between healthy cells and invaders. And yes, I know that sounds scary, but with a proper diagnosis and treatment, most of us who suffer from an autoimmune disease can manage day-to-day symptoms and continue pursuing our goals and artistic pursuits.
Autoimmune Facts according to the Autoimmune Association
The Autoimmune Association is a great resource that has helped me learn so much about people like me. For instance, did you know that there are approximately 50,000,000 Americans with autoimmune diseases? Of their cases, there are about 100 known autoimmune diseases, and it takes 4.5 years to receive a diagnosis. I can definitely relate to that one, because it took a long time for me to receive an accurate diagnosis and plan of treatment.
Additionally, autoimmune diseases are the 3rd most prevalent disease category in the United States, surpassed only by cancer and heart disease. 80% of all autoimmune patients are women and 25% of people living with an autoimmune disease have multiple diagnoses. Let’s talk a little bit about my autoimmune disease, Primary Biliary Cholangitis, or PBC.
What is PBC?
I learned more about my disease, Primary Biliary Cholangitis (formerly known as Primary Biliary Cirrhosis) from the National Institute of Diabetes and Digestive and Kidney Diseases. Here’s a summary of what I learned:
PBC is a rare, chronic, autoimmune disease in which the small bile ducts in the liver become injured or inflamed and are eventually destroyed. When there are no bile ducts, bile builds up over time and causes liver damage, which can become permanent and ultimately lead to liver failure.
PBC is NOT caused by alcohol consumption. It is caused by several genetic and environmental factors.
The survival rate for patients with PBC is dependent upon response to treatment and progression of disease.
The symptoms of PBC include chronic fatigue, brain fog, pruritus, dry eyes and mouth, digestive issues, high cholesterol, bone, muscle, and joint pain, neuropathy, hypothyroidism, and more.
A little more about my diagnosis…
My diagnosis took from 2016 to 2021 and included some inconclusive blood work, an ultrasound, an MRI, and lots of confusing responses from doctors who weren’t sure what was wrong with me. I was eventually diagnosed by a gastroenterologist and started a treatment plan including medication and adjustments to my diet.
I have had to really focus on my gut health because so much of our immune health actually lives in the gut. The gut is often referred to as our “second brain” and houses tons of our nervous activity. So a healthy gut can improve not only our physical and autoimmune health but also our brain health and emotional wellbeing.
Addressing and managing symptoms:
Every autoimmune disease is different, and I can only speak to my personal experience with PBC, but there are some things that anyone with a diagnosis can focus on when addressing and managing their symptoms. Firstly, there is just no substitute for rest and self care. Especially those who are artists like me may want to push themselves too far, and believe me, that crash is not worth it.
We all need to have regular blood work done and watch our numbers. Having a good relationship with your healthcare team can really help, because these diseases can be very elusive at times. Ultimately, you need to be your own best advocate. Many of us have received incorrect diagnoses before discovering what is really going on, so patience is also key.
On the day-to-day, it is crucial to prioritize sleep, eat healthy, well-balanced meals, get plenty of sunlight and exercise, and reduce stress by resting whenever you can. And I’m sure this goes without saying, but it’s also important to commit to taking your medicine and vitamins on schedule every day.
How to stay positive with a chronic illness:
Education: I have felt very empowered by educating myself so that I can fully understand my disease, symptoms, and risks. It also helps me make better decisions about my action plan.
Communication: Talking openly about my feelings with my family and close friends has helped me to feel so supported. It has also helped my circle of trust understand me when I’m not feeling well and when I need help.
Connection: I have gotten so much out of connecting with others like me and participating in support groups and social media communities, and it has made me feel way less alone.
Gratitude: Being chronically ill is tough but there are still things you can be grateful for each day, even if they are small!
Service: Helping others and having a positive impact on the world around you can do wonders for your spirit.
Letting go: While I would truly love to wave a magic wand and be rid of my PBC, we can’t control everything. Go easy on yourself and remember that it’s okay if everything isn’t perfect.
Balance, Patience, and Flexibility
My tips for achieving some balance in life with an autoimmune disease go something like this: Recognize that you can’t do everything and that you need to prioritize a healthy work/life balance. Feeling your best means you’re able to work at your best! There will be days or periods during a given day when your autoimmune disease flares up or takes over. Be patient with yourself and your symptoms.
Take advantage of the times when you feel good! Finding a career that offers flexibility in terms of location and schedule can make a massive difference when it comes to your health. As a professional voiceover artist, the ability to work from home is life changing for me. Create a workspace that works for you and helps you feel your best.
And most importantly, remember that you are not alone. There’s a lot of us out here figuring it out every day, and the more we work together, the more successful we will be.