What I’ve Learned in 20 Years Since My MS Diagnosis

What I’ve learned in 20 years since my MS diagnosis is that I am resilient and although life might not be what I imagined for myself, life is good and I’m going to be okay. There is definitely a learning curve to navigate living with a chronic illness and there were some difficult lessons to learn along the way, but here I am 20 years later, still me and still giving MS the finger.

Life interrupted

Life as I knew it came to a screeching halt on January 18, 2001. I arrived in the ER with severe vertigo, crushing head pain, leg weakness, and my eye facing in the wrong direction. I was told I either had a brain tumor, a stroke, or Multiple Sclerosis.

I’m not sure which was more shocking; the fact that something was seriously wrong with me; the fact they couldn’t fix me; or the fact that the ER docs dropped a bomb on me and just sent me home in that condition. I had no real understanding of what was happening to me or what MS even was.

What I’ve learned in 20 years since my MS diagnosis

What the heck is Multiple Sclerosis?

MS is an autoimmune disease that affects the central nervous system, specifically the brain, optic nerves, and spinal cord. Disease activity and progression are as variable as it is unpredictable.

MS is considered a snowflake disease because each person’s experience is so different. Therefore, it doesn’t really matter what someone’s aunt’s sister’s cousin did, they are not you so it’s irrelevant.

The most important thing I’ve learned in 20 years since my MS diagnosis is the first step for the newly diagnosed should be to create a personalized disease management plan.

The goal of creating a disease management plan is to specifically identify your individual needs and then structure a care team and support network that can be utilized whenever needed.

Be an active participant in your own healthcare and learn to advocate for yourself.

Nobody knows your body better than you do so it’s up to you to make sure your needs and concerns are addressed. Decide what you need and take action to get it. Click here for self-advocacy tips.

MS is not your fault.

Thankfully, I never got caught up in why I got MS. Whether an infection, virus, Vit D deficiency, or terrible habits, on their own they don’t cause MS. Known risk factors are a combination of genetics, lifestyle, and environmental triggers. We are not responsible for our genetics. So, whether or not I ate too many processed foods and not enough greens, that did not cause MS. Having a chronic illness is not my fault.

Take care of mental health.

Depression is one of the most common symptoms of MS and yet there is no counseling in place for the newly diagnosed. People need to learn coping mechanisms to transition to living life with a chronic illness. Furthermore, there is no ongoing mental health care to deal with things that come up like; loss of abilities, jobs, relationships, sense of worth, and more.

Self-acceptance and learning to recognize stress can go a long way to help build resilience and practicing stress management strategies are vital to cope with the unpredictability of symptoms and their impact on our lives.

Build a support community.

Living with MS can be scary, frustrating, and exhausting especially when experiencing invisible symptoms that friends and family don’t understand. Early on, I read that people living with chronic illness should pick three people that they could count on in case of emergency, no questions asked.

Figure out who you can count on before you need to count on them.

MRIs aren’t the whole story.

Getting too caught up with MRI results is not helpful as they do not tell the whole story. MRI scans are routinely used to diagnose and monitor MS, by highlighting areas of myelin damage. But these scans don’t pick up everything happening in the brains of people with MS. As many people with MS can attest to, having a clinically stable MRI does not mean a thing if your body didn’t get the memo!

Since many lesions seen on MRI may be very small, have caused very little damage, or the brain has developed a workaround, it is not always possible to make a specific correlation between what is seen on the MRI scan and your clinical signs and symptoms.1

Use it or lose it.

Exercise is good for everyone but it’s especially important with a disease like MS. According to the MS Society (UK), exercise can improve symptoms like fatigue, pain, balance, and mobility problems.

Stretching can improve muscle tightness, spasticity, and range of motion while aerobic exercise can improve fatigue, strength, mood, and cognitive function.2 Resistance training is also recommended because weight-bearing exercise can slow the loss of muscle and bone mass in MS.3

Eat better to feel better.

I wish I had recognized the importance of an anti-inflammatory diet, and its potential impact on MS symptoms sooner than I did. (Other than the obvious)

Diet will not cure MS but improving eating habits have directly and indirectly helped me with symptoms like; fatigue, pain, heat sensitivity, migraine, gastro issues, and brain fog.

MS diets are not just about food but also about adopting healthier sustainable lifestyle habits that support brain health and the immune system.

“Changes to diet, wellness, and physical activity could have a profound effect on patients’ ability to manage their multiple sclerosis (MS) and significantly improve their quality of life.”4 

Positivity or negativity is just a matter of perspective.

The pessimist tends to see problems as permanent and expects a bad outcome and the optimist views problems as temporary setbacks and expects a good outcome. Living with MS, it’s hard not to have a little of both inside.

MS is a life-altering diagnosis and takes a lot from us so sometimes it can be difficult to imagine a positive outcome. Ultimately, we are responsible for our own thoughts. We’re the ones who give significance to ‘good’ or ‘bad’ things depending on our perspective.

The best lesson I’ve learned in the past 20 years is to try to imagine a negative situation with a positive outcome. It may seem silly but it can help you get to a healthier headspace.

“The positive thinker sees the invisible, feels the intangible, and achieves the impossible”  Winston Churchill

You can’t control everything!

This was a hard lesson to learn but MS doesn’t care about your schedule, your plans, or your feelings. MS is like an unwelcome storm that blows in, wreaks havoc, and leaves you to clean up the mess. You rebuild and then take the necessary steps to be better prepared the next time. But, you can’t control the weather and you can’t control MS.

Takeaway-

When you live with a chronic illness, you must put yourself first. You have to understand your treatment plan and take charge of making sure disease activity and symptoms are monitored and managed. Mental health has to be a priority as stress can trigger disease and exacerbate symptoms. Listening to your body is essential, trying to please others is not.

Living with MS has made me realize that not everything has to be perfect and sometimes good has to be good enough. I may not like it, but I can live with it.  By advocating for ourselves and taking small steps to improve overall health, we can over time make big changes that improve quality of life and allow us to live better with MS.

What I’ve learned in the 20 years since my MS diagnosis is that although my priorities and perspective may have dramatically changed since that fateful day in 2001, I have not. Not in the ways that matter.

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1https://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools/MRI

2 https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Exercise

3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5602953/

4 https://www.mdpi.com/2075-4426/11/11/1218

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