Courtney Soule

The following information is a personal account only and is not intended to provide medical advice or a suggested treatment plan. Consult your doctor for your specific health needs.

I lead communications for the Great Lakes Bay Regional Alliance and I have been one of the people behind the scenes for the iMatter Anti-Stigma Campaign and other efforts for the Great Lakes Bay Region Mental Health Partnership initiative. I’ve been inspired by our previous anti-stigma stories and I am honored to share my own.

I was always referenced as the ‘healthy one’ in most situations. I don’t eat fast food and I had gone several years as either a vegan or vegetarian, exercised regularly and did things like making the switch to using only clean and non-toxic personal care and home products well over a decade ago.

I also did not tick a majority of the boxes for potential health-related triggers for autoimmune disease. I was not born via C-section, was breast-fed as a baby, and did not have any overly stringent rounds of antibiotics as a young child. Autoimmune issues do not run in my family. 

All of which made my 2019 diagnoses of multiple sclerosis (MS) that much more surprising. 

Autoimmunity is the general reaction of the immune system attacking itself in some form or fashion. MS is an autoimmune disease that impacts the nerve endings (called myelin) in the brain and spinal cord, and thus can have extensive and varied ramifications as far as disease presentation, progression and symptoms. The disease is diagnosed most often through lesions within the brain and spine, which show up as white spots in an MRI.

MS is a chronic, incurable, neuro-degenerative disease, meaning that my brain, under the normal, statistical trajectory of cases, will degrade and shrink over time. This generally happens in a number of diseases in addition to MS, including Huntington’s, Parkinson’s and Alzheimer’s. 

So, long story short, the cards are stacked against me.

The initial shock of diagnosis was intense. It felt like walking down a hallway holding a large stack of papers and the roof of the building being ripped off, taking my papers with it and scattering them miles away. Those first days and weeks, it was hard to envision a future, or I was at least incredibly worried of what that future would look like. I was diagnosed on a Friday morning and I don’t remember much of the first weekend other than crying a bunch. I felt scared, overwhelmed and a bit numb having to process so much – the roof of my health and the future had just been ripped off.

Being a health nut already, I immediately got to work learning all that I could about this disease, including what factors were in my control. Autoimmune diseases all boil down to an inflammatory response. So, to me, that meant I had to find the sources of inflammation. 

After I had my personal pity party that first weekend, I got to work learning all that I could. I learned how I could potentially control inflammation, or work to find the source. All the health books I had previously now had an entirely different meaning and I took comfort in seeing people like Kris Carr, who I had followed before having chronic disease, with her empowered approach to her health. Like her – I became the CEO of Save My Ass Technologies, Inc., which meant we were going to do this my way.

Some of what I learned is the incredible connection between the brain and the gut and that 70-80% of the immune system lies within the gut.

MS is said to be like a snowflake, and uniquely detailed to each person who has it. The brain and the spinal cord are incredibly dynamic and delicate areas, which means demyelination, presents through a varied array of symptoms from balance and motor function, to vision, to numbness, to fatigue. So far, mine presents as numbness and tingling.  

My treatment plan is probably classified by the mainstream medical community as non-traditional, and certainly as far as MS and autoimmune diseases go. Through my research, I learned that the gut-brain connection is a vital two-way street. The small intestine contains a majority of the body’s neurotransmitters or mood-regulating hormones and the gut can impact the central nervous system in the brain.

People with MS also have a greater risk of developing depression for multiple reasons. First, it’s stressful to have a chronic disease and second, MS patients are three times more likely to deal with depression than the general population and is estimated that half of all MS patients will experience depression.

It is undetermined whether or not depression is a reaction to dealing with a chronic disease or a symptom of MS, but I can confirm that diagnosis at minimum comes with a significant amount of grief and uncertainty for what is to come. There is an adjustment to life as your ‘new normal’ and that is be an intense, varied and personal process for everyone dealing with chronic disease. I had a significant amount of anxiety initially about being stuck in a food emergency or situations where I could not control my level of nutrient intake (boatloads of healthy vegetables for instance) or worried about hidden gluten or dairy. To some extent, I still do and I often bring my own food and snacks.

I’ve taken the personal stance that I am going to combat this disease in a comprehensive way that considers body, mind and spirit. 

So, mental health has a more complex and personal meaning for me. It means mental fitness, stress management, longevity, aiming for a health-span over lifespan, and putting off neuro-degeneration for as long as possible. 

My mental fitness regimen includes:

• A diet that is gluten, dairy, soy, sugar and processed food-free.

• Doing some sort of exercise, daily, no matter what, which normally always means getting at least five miles in a day of walking and/or running and 10 miles per day on the weekends. It’s much harder to get ten miles in during the colder months, but March through the first snow I aim to have ‘marathon weekends’ or the goal to walk and run the total of a marathon a weekend, every weekend. Let’s just say I burn through a lot of shoes. 

• A gut and brain-centered supplement regimen that positions me for both gut, brain and mitochondrial health.

• Generally committing to regular movement beyond daily exercise. I have a standing desk and I don’t have a TV, which tends to help.

• Getting a reiki session at least once a month. Reiki is an energy practice that promotes a parasympathetic state. 

• Getting 7-8 hours of sleep a night.

• Meditating regularly (but to be honest I need to be more regular about it).

• Maintaining and respecting my energy levels, including not saying yes to things when I want to say no and going to bed early if I’ve had a trying day. 

• Going to therapy.

• Managing my stress levels.

• Various other things like yoga, acupuncture and other health practices.

This is my mental fitness regimen. It’s what works for me and so far, I’ve put myself into remission without any disease activity over the course of a few years. 

What I’ve learned is that it is a continuum. There are still days where I can’t help but have stress creep in or don’t get through my few family tubs of spinach each week. I aim to control what I can control and so far, that’s kept me in check and mentally on track to create the environment for health and healing. My advice for anyone dealing with a health challenge (mental or otherwise) is that there are factors within your control – focus on those. 

-Courtney Soule

Director of Communications

Great Lakes Bay Regional Alliance

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