Grieving and Dealing with Autoimmune Disease

What does it feel like to get a diagnosis of chronic illness unexpectedly? How do you deal with the emotional pain of losing your health and the new limitations of your body? Will your life ever be the same again? I sat down with co-hosts El Brownell & Dave Koch of Power Adulting Podcast to answer these and other autoimmune-related questions.

Tune into the episode here or on Apple Podcasts | Spotify | Google Podcasts | Amazon Music

Personal Journey of Discovery that Led to My Passion of Holistic Healing

My passion for a healthy lifestyle was born out of necessity.  Back in 2016, I was diagnosed with Rheumatoid Arthritis (RA) which literally cratered my life.  I basically went from feeling perfectly healthy to being diagnosed with a life-long, chronic illness.  And I spent the next three years looking for ways to reclaim my health and educate myself on holistic health, mind-body connection, immune function, different diets and gut health. 

One of the most useful findings of my research was that 70% of our immune system resides in our gut.  So, the health of our gut affects the strength of our immunity and our overall health.   It became very clear to me that good health starts with a healthy gut.  

What is Autoimmune Disease and What are the Daily Challenges?

In simple terms, autoimmune disease occurs when your immune system starts attacking your own tissue and organs. 

Symptoms can vary from person to person depending on the severity of the condition.  In the daily lives of someone with an autoimmune condition, one may experience symptoms that interfere with their productivity at work, ability to concentrate or even carry out simple daily tasks, such as getting dressed or taking a shower in the morning. 

Some of the symptoms may include invisible symptoms such as brain fog, low grade fever and chronic fatigue.  Other symptoms may be visible through physical presentations, such as swollen hands and feet or red patches on the skin, in case of psoriasis.  So, everyone presents their symptoms differently, but they can be visible, invisible or both depending on a condition.     

What are Some Symptoms that May Lead to Autoimmune?

I truly believe that learning to listen to your body is the first step in noticing important signs and symptoms that may eventually lead to autoimmune.

Chronic illness does not pop out of the blue or come on suddenly. We are all on a spectrum to some kind of illness throughout our lives. 

It is very important to pay attention to symptoms, even if they are mild, such as an occasional headache.  Our bodies are communicating to us every single minute of the day and sending us signals and I certainly overlooked some symptoms that I shouldn’t have, and they weren’t even mild.

For example, if you have headaches that come on suddenly, every now and then, it could be that your body is sending you an early warning. So, it is worth taking a pause, asking your doctor to investigate the cause, running some tests before the warning signs turn into a full-blown diagnosis of something severe as autoimmune disease. 

Taking the time to listen to your body and not dismissing any symptoms, even if they are mild, can be life changing. I had recurring cold sores throughout my 30s and treated them with medication for a prolonged period of time, which eventually led to a leaky gut and opened the door to autoimmune.     

What are Some Preventative Measures for People who do not have an Autoimmune Diagnosis?

It is really important to define what a healthy lifestyle is for you and live it. Eating well, exercising, engaging in self-care practices, reducing stress, taking time for yourself, slowing down are all good ways to live a healthy lifestyle. Everyone is different and has a different routine. Setting yourself up with these fundamentals is going to make the difference between enjoying your life or living it on autopilot.

For me personally, a big part of a healthy lifestyle is eating well because I’ve seen the difference it has made in my body and my condition.  I focus on whole foods, quality sleep, exercise and practice of true wellness, i.e. mind-body-soul.  

Does Sugar Affect Autoimmune Disease?

Sugar can be lethal.  It leads to inflammation, which leads to a host of issues in the body, including autoimmune.  One of the things I recommend that clients eliminate right away is sugar. Most processed foods we find in stores are laden with sugar.  This is why it is imperative to read labels and buy clean label products. It is important to understand that whatever you put in your body is either hurting or improving your gut health.

Tips for Living with Autoimmune Disease

Receiving a diagnosis of a chronic illness is a big deal.  It essentially means the loss of your health and truly is a devastating event in one’s life. As of now, there is no known cure for autoimmune diseases.  This is why it is so crucial to pay close attention to any symptoms you may experience, even if they are mild or if you think you are perfectly healthy.   

While there is no cure, living well with autoimmune disease is absolutely achievable. Here are some tips:     

  • Learn and become informed as much as possible about the disease. (Information is Power!)
  • Be willing to try everything to find the right treatment (some things will work, while others won’t).
  • Surround yourself with a strong support system to include medical professionals as well as friends/family, etc. (and do not be afraid to ask for help as needed!).   

Is There One Treatment Plan for People with the Same Autoimmune Disease?  

Everyone is unique and no two people are alike.  Something that may work for me, may not work for someone else with the same diagnosis of Seronegative Inflammatory Polyarthritis.  And at the onset of the condition, the tests may not even show its presence, but if you have physical presentations, which may vary from person to person, you are already affected. 

So, it is very important to take note of the symptoms, discuss them with your medical team and then try different things to see what works and what doesn’t.  Everyone has different experiences with the same condition and the same diagnosis.  The treatment may also depend on the severity of the condition. 

I am fortunate to be able to manage my condition holistically without medication, but it may not be the case for everyone. 

Emotional Pain of Receiving an Autoimmune Diagnosis

When you are diagnosed with a chronic illness, you are going to face a close encounter with grief. Grief is personal and does not follow any timelines. 

Elisabeth Kübler-Ross, who was a psychiatrist and worked with terminally ill patients, developed a theory of the five stages of grief, also known as the “Kübler-Ross model”. The five stages are:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

It is very common for autoimmune patients to go through all or some of these stages of grief (and not necessarily in this order).  Everyone grieves differently and it is a non-linear process. 

I personally went through all five stages of grief after being diagnosed.  It all started with denying my diagnosis because I could not bring myself to accepting a permanent and debilitating condition.

Then, I began to feel angry. During this time, I started hating my body because I felt like it had let me down.

Next, I moved into the bargaining stage where I would bargain with myself: “I’ll cut sugar out of my diet, if it makes the pain go away…”.

Then, came the depression part of the grieving process.  I felt like everything was wrong with me and I had lost my identity. Self-defeating thoughts like: “What kind of colleague or a friend am I if I can’t go on a hike or sit through a meeting for an hour fully focused?” consumed me.

It wasn’t until I finally arrived at acceptance that I was able to shift out of a victim mentality and focus on things I could do to take control of my health and my life. 

While acceptance is not a happy, uplifting place, it is a place that can help you move forward and focus on what you can do, with the limitations that your body now has, to work with your condition instead of trying to cure it.

The Most Common Question Autoimmune Patients Ask

“Will my life ever be the same now that I have this chronic disease?”

The best way I can answer this question is: Your life will change, and it is going to take time to accept the condition and find the right treatment.  But when you do find a way to manage your symptoms, you can absolutely still have a fulfilling and joyful life!  

  • Be realistic about what you can and cannot do and prepare yourself for the ups and downs of living with a chronic condition.  Some days you may feel great, while other days maybe very challenging.  
  • Be patient with yourself, listen to your body and slow down when it feels overburdened.  
  • Be kind to yourself and remember to love your body even when it is aching and not feeling its best.

How Can my Autoimmune Coaching Program Help?

I am not a doctor or other medical professional and I do not diagnose, treat or give medical advice.

In my role as a 1:1 personal mentor and accountability partner, I provide clients with the support, tools and strategies they need to make lasting, sustainable changes and manage their autoimmune condition holistically long-term.

My program is custom designed around client’s unique needs and circumstances to help them push through the limitations and challenges of living with an autoimmune condition and take control of their health by getting on track with the right lifestyle changes, such as nutrition, self-care, positive mindset and exercise.

What Food Can You Recommend to Someone Who Doesn’t Like Eating Vegetables?

Nothing is ever going to replace fresh, seasonal produce like vegetables, from a nutritional standpoint. 

My advice would be to experiment with different textures and flavors, such as adding herbs or spices to cooked vegetables or dipping them in your favorite dips and sauces. You could also try different cooking methods (steaming, stir-frying or roasting) as well as adding veggies to your favorite foods. 

For example, you could add spinach to your eggs in the morning or add delicious oven-roasted sweet potatoes to your grain bowl for lunch or dinner. 

My favorite recipe for an on-the-go snack that incorporates a healthy dose of spinach is the Superhero Spinach Balls by Kimberly Snyder from her Recipes for Your Perfectly Imperfect Life cookbook.  I created a video on Pinterest on how to make these. They are absolutely delicious and are baked in the oven in just 20 min.

What is Your Daily Routine?

One of the things that works for me is getting 8 hours of sleep every night. I’ve learned from listening to my body that 8 hours of sleep is optimal for my health. 

Another pillar of my routine is eating well.  I only buy clean label products, organic whole foods in season and make sure to cook them in clean, anti-inflammatory oils.

Other self-care practices include meditation and regular exercise.

I am also working daily on letting go of being a perfectionist.  My new motto is Progress over Perfection. I’ve come to realize that at the end of the day, it is not about being perfect, but more about having a forward-thinking mentality, positive mindset and practicing gratitude.  I am absolutely convinced that the more gratitude you practice, the more abundance you invite into your life.

Favorite Apps, Books, Podcasts and Websites

  • For anyone dealing with an autoimmune diagnosis, the Autoimmune Wellness Guide by Mickey Trescott and Angie Alt, who have five autoimmune diseases between the two of them, is a great guide and resource.  It goes into all the nuts and bolts of autoimmune and lays the foundation for the best way to manage it long-term.
  • Topics on self-worth, self-development, self-esteem, spiritual growth, visualization, affirmations, happiness and abundance in life – Dr. Wayne Dyer and Louise Hay

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