MS Awareness: Are We Shooting Ourselves in the Foot?

March 29, 2022
5th week, MS Awareness Month

I let my hair down last night.  I posted a distressing message on social media.about MS Awareness Month.

I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.

Throughout MS Awareness month, I guess I was irritated by the upbeat MS events, activities and stories I’ve been reading all month on numerous publications and MS platforms. I was tired of all the happy posts on social media, and wanted to express my real feelings at that time. It seems the same every year.

I get it that people with MS need lifted and this is an appropriate time to do just that. But why does it stop there?

Truth is, people need EDUCATED more about MS.  It sucks. It’s hard. And I’m tired of.  pretentious posts by people who glorify that that “MS” doesn’t define them. MSers are shown doing all kinds of wonderful things. “There are SO many treatments available now. Just pop a pill or get a shot.”  Inspiring, yet defeating. Are we shooting ourselves in the foot?

I want honestly. Realism.  Why aren’t there more innovative ways to help people UNDERSTAND the complications and implications of MS.  Display faces of distress and sadness instead of smiling ones. Why not show a list of things that cause financial impact–job loss; medications; bladder supplies;  equipment… Or of our losses–income. freedom, independence, social life, household limitations…

I was gratified that some online websites offered great MS education in March. MS Wellness Project has an excellent post about resources. The Rocky Mountain MS Center  has a free newsletter entitled “Painting the Picture of MS: How can we help the People Around Us Better Understand Multiple Sclerosis?”

There are one million people estimated in the U.S. (2.5 million worldwide) living with MS. However, when you count the people not living with it–friends, family, healthcare workers, employers, public service, strangers, etc.– the number dealing with MS is in the millions!  Helping everyone to understand MS helps those of us living with it.

Today is another day. It’s education time, one of my passions in life. If everyone dealing with MS educates just one stranger with MS, it’s an impact. There are strength in numbers.

Although MS Awareness Month is over, educating others about MS doesn’t have to be,

What do you think?

Debbie Petrina
Author of Managing MS
Community Advocate for


How do you Manage MS?

“Want some help?”

Everybody wants a cure for MS, to halt the progression of it, and restore the damage it causes to us. But what do you do in the meantime until those things happen?

You manage your MS effectively.

If you ask people with MS how they manage it, most would respond by saying what treatments/meds they are taking and then add that they may exercise, do yoga, etc.

While this is true, it’s only a small part of a big answer. Everything about MS is complicated: the diagnosis, the symptoms and relapses, treatments, health team support, relationships, the explanation…  ALL of these things have to be managed effectively in order to survive MS.

One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case. Yes, let me repeat that– One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case.

I know, and I know countless others who know. Beginning in 1980, I’ve lived with it for 34 years, and have been actively involved in the MS community for nearly thirty years. An ordinary person of moderate means, I went through motherhood, had a career I had to eventually give up, managed a household, and enjoyed life.

In a nutshell, these are the main objectives in managing MS:

1. Prevent sickness/infections, physical problems, and long-term chronic stress.
Why?  Because any of these will trigger a relapse. And relapses usually result in progression and nervous system damage.

2. Take care of  your body in all ways to be healthy.
This includes getting enough sleep, exercise, eating sensibly, managing stress, being mentally and emotionally happy, etc. This also includes things like weight watching, no smoking, etc.

Why?  Staying healthy keeps one’s resistance up to prevent getting sick (thus preventing relapses) as well as keeping symptoms from intensifying. In addition, maintaining wellness helps prevent your body from getting other serious problems like high blood pressure, diabetes, poor circulation…

3. Carefully choose and monitor your treatments.
While drugs are often helpful for treating symptoms, relapses and slowing progression of MS, there are downsides.  First, one must remember that all drugs have side effects that add stress and other impairments to the body. Second, MS is a life sentence; one may live decades until a cure is discovered to halt progression or restore damage. Every drug taken is passed though the liver and has other risks. There is not a treatment that exists today that totally halts progression, relapses, or improves symptoms.

4. Use a 2-prong approach when managing symptoms.
In addition to using medications, there are SO many ways that MS symptoms can be managed non-medicinally—pain, spasticity, bladder issues…  Often, using a combination of using medicinal and non-medicinal means together can be helpful as well. For example, I take baclofen and do stretching exercises daily to reduce my spasticity.

In addition, alternative non-medicinal therapies  have been successful like yoga, acupuncture, massage, pilates, etc. to help with symptoms.

Managing MS effectively requires a tremendous amount of knowledge and support. It’s hard, it takes time, requires change, but it works.  However, learning to managing MS is a daunting task because we know that no two MS cases are alike and the disease is so unpredictable. Furthermore, because there is so much information available from so many sources, one can become overwhelmed and confused.

Want some help?

My book “Managing MS: Straight Talk…” is now available on eBooks for only $2.99 . You can also check out my website below for oodles of info—articles/resources with links, videos, my MS blog of nearly seventy articles, my credentials… The information is accurate, easy to understand, and concise.

My personal mission is to help others dealing with MS, and these two tools—my book and my website—will definitely help you with something. There is nothing to lose, and I guarantee something to gain!


**Video:  “How to Manage MS: Two Tools”
Author/MS Counselor/Living with MS