Lifestyle Modifications: How I Gained Control Of My Autoimmune Disease

I remember the day I received my unofficial diagnosis of ankylosing spondylitis. It was mid-afternoon on Saturday, November 2, 2019. I was in bed (if you think that is odd for a mom of three young kids, then you are correct). The pain was exhausting. I could not care for my family, which at the time included three boys under the age of four. 

The Call

I reached for my cellphone that was buzzing on the nightstand. It was my family doctor who had, after 10.5 long months of waiting for an MRI, received the results from the scan of my SI joints. He said, “The good news is that you do not need back surgery. However, something is not quite right as the MRI results show multiple corner bone marrow edema-like foci, which suggests there is evidence of inflammatory spondylitis. I will send the results to a rheumatologist and see if they have advice. You can rest assured that you do not have to live in pain for the rest of your life. There are treatment options available.” At this point, I had already lived with the symptoms of this mysterious disease for decades. My first reaction to my doctor’s message was,

Yay! Finally, they found something: it is real and not in my head!

I was tired of seeing medical professionals who claimed nothing was wrong with me and unable to help me as a result. This unofficial diagnosis validated my pain and gave me a starting point for treatment. Ironically, the suspected diagnosis of incurable and painful arthritis that freezes bones of the spine and pelvis (amongst other things) brought relief that day.

The Overwhelm

The relief of a diagnosis was immediate, but overwhelm of this diagnosis kicked in soon afterward. During the span of that telephone call, I had gone from being a healthy person with back pain to an individual who was diagnosed with an incurable disease. Google searches fueled my fears and worries. I read many horror stories and kept thinking,

This is my future!

I realized at that point that even though I had had symptoms for years, I was likely still in the beginning stages of the disease (x-rays had not yet shown any fusion of my spine) and that my future looked grim. I was 34 years old at the time of diagnosis. The thought that, possibly, my life was not even half done yet filled me with dread.

More Waiting

My family doctor had assured me that he would immediately refer me to a rheumatologist. This rheumatologist would be able to give me a firm diagnosis and get me started on medications that would, hopefully, help manage my pain for the rest of my life. I had read about these medications. While many people thrived on these drugs (biologics), I was well aware of the significant risks and side effects. Likely, if I had had access to the medication at that moment, I would have jumped at the promise of quickly reduced pain. Unfortunately (or in hindsight, fortunately), the wait to see a rheumatologist for an initial appointment was 6-8 months long. That was 6-8 months longer than I wanted to wait. 

The System

For decades I had felt like I was at the mercy of the medical system – a system that had continually let me down. I was a box to be checked. I was a body to shuffle to the next profession and procedure. I felt trapped in a medical system that seemed predetermined and impersonal. Even with pain management options available, I wanted more for my life. I could do it no longer. I could no longer sit and wait in agony for months on end for yet another appointment where I would learn what the next step of my journey would be. I had to do something.

The Determination

I had many questions (which I had often been discouraged from asking). Therefore, I set out to look for answers. I was motivated to take matters into my own hands as I waited for another appointment. My thought process was,

This is my life. I have to live with this body for the rest of the days granted to me. I am ready to ditch all things that may be contributing to my unwellness.

I had to get to a point where I was willing to give up the things that contributed to my autoimmune disease. I would see the rheumatologist whenever that appointment came up, but I would not sit and do nothing while waiting. (Please note that I am sharing my experiences only. I do not recommend that others make significant lifestyle changes without consulting appropriate medical professionals first).

The Hope

As I started digging, I was astounded by all the stories of healing and remission I stumbled on. These stories were anecdotal, but they were real. Real people. Real AS. Real lives that had changed due to lifestyle modifications. I was desperate and ready to throw in my best efforts. So I did. Changing my diet and lifestyle resulted in glorious relief of pain and stiffness and, in my case, halted disease progression.

Dare To Be Different

That leads me to where I am today. My rheumatologist told me I am her healthiest patient but is not interested in hearing about why I am doing so well. A dietician told me I was foolish for doing what I was doing. She told me to return to the Standard American Diet stat despite seeing my life-changing improvements. Regularly, other individuals laugh at me, saying: “Thinking happy thoughts and eating kale is not going to heal people!” That is ok. I understand why people feel that way. It seems too good to be true that, given the proper nourishment and environment, a body is often capable of incredible and unexpected healing. 

The Proof

I am here to tell you that you have way more control over this disease than you may realize. While I do not believe there is a one-size-fits-all approach to managing AS, my life is proof that real change and thriving is possible with lifestyle and diet adjustments. While I found a starch-free diet critical to my improvement, this may not be the answer for everyone. Still, if you focus on health and vitality instead of disease, you might be surprised by the results.