MS Awareness Month: Creating an Inclusive and Compassionate Society
As an advocate, I speak to people in the MS community every day. We chat about our disease and what it's like living with it. One wish I often hear is for the able-bodied community to better understand what it's like to live with MS.
I don’t know about you, but I think of my life in terms of chapters, except my chapters aren't arranged in numerical order. Instead, they're divided into two categories, before and after diagnosis.
Before my MS diagnosis, I could ride a bicycle for miles and miles. In the summer I'd play softball, basketball, or kick-the-can from morning until sundown. When my husband, a devoted tennis player, and I were dating he'd give me tennis lessons. Of course, he beat the pants off me, but we always had fun.
Looking back I didn't realize what magical days those were.
It’s been a long time since I could run, ride a bike, or walk endlessly. I miss those bygone days.
2014. I always felt so free on my bike.
No matter what "type" of MS you live with life is constantly a challenge. After losing any ability, such as walking, your days can be frustrating, maddening, and completely heartbreaking.
In time, some people can learn to live with their new normal while others can't. It's a tricky road we travel.
Over the years I've made a conscious effort to hold Jon Kabat-Zinn's quote close to my heart:
"There's always more right with you than wrong."
It sounds trite but it works for me to keep that beautiful sentiment in mind.
Zinn's wisdom gives me hope for better days ahead.
The way I figure it, no one escapes this life without facing some sort of adversity. MS was simply the hand I was dealt.
There are better days than others but when they're tough I've learned to meditate and focus on what I still can do.
I can work. I can speak. I can walk. I can swim. I can drive. I can stand. I can talk. I can laugh. I can dress. I can write. I can think.
And I can feel grateful for all of these blessings.
I want you to know that whenever you see me you're seeing the best possible version of me. I rest when my body tells me to, which is quite often, and I can safely say that most people in the MS community do the same.
Some of us choose to take medications specifically designed for our MS (called disease-modifying therapies) to hopefully put the kibosh on disease progression. Some work for us, and some don't.
We're called the "snowflake disease" because no two people have MS alike, and none of us react to medications in the same way.
We can feel okay one day (or days) and lousy the next day (or days). It's a very fickle disease!
Symptoms of MS can include pain, bladder, bowel and cognitive dysfunction, vertigo, weakness, numbness, optic neuritis, insomnia, dizziness, spasticity, fatigue, depression, and anxiety.
And the comorbidities that often accompany our MS diagnosis, such as various autoimmune diseases, gastrointestinal diseases, vascular and cerebrovascular diseases, chronic lung disease, and vision problems.
Instead of seeing us as an extension of our disease, I hope you'll look at us for who we are. We are made of beautiful hearts, souls, and minds.
We're so much more than what meets the eye.
A bunch of MS advocates hanging out and having fun together! I love our community.
Thanks for listening and for taking positive steps toward creating a kinder, more inclusive, and compassionate world for everyone.
NOTE: Click MS RESOURCES at the top of this page to learn more about MS. Thank YOU
Why I'm Thankful For My Multiple Sclerosis Diagnosis
The following originally appeared in The Huffington Post in 2015 for MS Awareness Month. A few minor changes were made to reflect how I continue to feel in 2023 about living with MS.
The philosopher John Lennon famously wrote, "Life is what happens when you're busy making other plans." The life we imagine for ourselves isn't always the one we get. Our paths can take sudden turns down unexpected byways, leaving us to battle unchartered territory.
March is MS Awareness Month, a time to remembertheover 2.5 million people worldwide living with an unpredictable and incurable disease called multiple sclerosis.
Strength, resilience, hope, and courage are important words to remember while thinking about the MS community.
And of course a cure.
As February drew to a close I didn't know what to write about to honor this important month. How could I put a positive spin on a disease that's often an unrelenting taskmaster?
At the same time, I've always tried to look for a silver lining in any situation, despite any challenges.
That's part of a sound mental wellness plan.
Then it hit me! As an obsessed fan of classic films such as "It's a Wonderful Life," I thought about Clarence...you know, Clarence the Angel.
Like Clarence granting George Bailey the ability to see what life would have been like if he'd never been born, I wanted to write how different my life would have been without my diagnosis.
I would never have known the joy and unconditional love of dating someone who proposed marriage to me despite my recent diagnosis. (This year is our 35th wedding anniversary!)
I would never have felt the unconditional compassion and understanding of family and friends who love me at my best and worst.
I would have missed out on knowing extraordinary nurses who went above and beyond anything they learned in nursing school.
I wouldn't know MANY extraordinary people in the MS community, and other health-related communities, who continue to inspire and educate me through their examples.
I would not have had a reason to use my love of writing to inspire, educate, and empower others to live, as best as possible, a positive life after a difficult diagnosis.
I would not have had an opportunity to write for health-related websites and online publications that allow me to write about something I feel passionate about.
I would not have had a chance to be a speaker and a consultant for many organizations where I'm free to speak about MS from a patient's perspective.
I wouldn't have had an opportunity to speak about ability and disability to people who've made a tremendous impact on the world. Alan and Arlene Alda, Ken Burns, Goldie Hawn, Mrs. Gene Kelly, David McCullough, Diana Nyad, Cokie Roberts, and Steve Wozniak, to name a few. I "name drop" only because I respect and admire each of them for stepping beyond their creative work to make a difference in the lives of others.
I wouldn't have been able to teach my son, by example, that disability doesn't mean inability, and that tolerance, compassion, and understanding always matter most.
I look forward to the day when I can finally say, "I used to have MS." That will be the greatest day of all.
MS is something I'd never wish for, but as a friend once said to me, " You're part of a club you never wanted to be in, but since you are, you may as well be one of the cool kids." INDEED.
So I'll be mindful that despite my diagnosis I'm surrounded by many blessings.
And, like George Bailey, I cannot be a failure because I have many wonderful, caring friends - both near and far.
I'm thankful for my diagnosis because it taught me self-compassion, survival, the importance of careful research, and always keeping hope in my heart.
My best friends, my husband, and my son.
ABOUT MS AWARENESS MONTH:
National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the public's awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease and to assist those with MS in making educated decisions about their healthcare.
To learn more about MS from various MS organizations please check the list of MS RESOURCES located on the tab at the top of this page
What Advice Can Twelve MS Advocates Offer Patients About Living with the Disease? (Spoiler: Plenty)
Can people living with MS still achieve a fulfilling lifestyle? The disease can be unrelenting and unpredictable by showing up whenever it pleases. How can you move forward after receiving such a devastating diagnosis?
MS advocates on achieving a fulfilling lifestyle
Since March is Multiple Sclerosis Awareness Month I thought it’d be the perfect time to ask twelve accomplished MS advocates (who I know and trust) to share their knowledge. In their own unique ways they shine a light for others to follow with the same courage and determination they’ve depended on for their own MS journey.
These advocates make it their mission to empower the community so that no one ever feels frightened or alone.
Their responses answer a single question that’s important for the newly diagnosed and anyone struggling with the disease. You’ll find powerful information in each response that you can rely on for years to come.
Please leave any comments or questions you may have and I’ll get back to you as soon as possible. Here we go!
[Oh, before you move on please click here to read why I’m thankful (yes, you read that right) for my diagnosis. It’ll lift your spirits and possibly change your perspective.]
Advice for those newly diagnosed with MS
The question I asked each advocate: What advice would you give someone who is newly diagnosed, or is struggling with the disease, based on what you learned since your own diagnosis?
Caroline Craven
Diagnosed 2001 Learn more about Caroline on her blog The Girl with MS
Since my diagnosis in 2001, my awareness of being compassionate toward myself has increased dramatically.
In the beginning there was guilt, depression, and anger at what was happening to me. Why can’t I walk or see right now? Where is my once powerful, strong body and mind? But by learning to let go of my ego (not an easy thing to do!) and asking for help, my compassion toward my delicate new self developed.
In using these new self-care skills, I found ways to thrive in life. I still have bad days and symptoms are always peering around the corner. During those times I cradle my heart in my arms, give myself a hug, and remind myself that everything is going to be OK.
And hey, it can even become better. As we keep our awareness open, and love ourselves, remember, we’ve got this, it does not have us!
Damian Washington
Diagnosed in 2016. Learn more about Damian on his YouTube channel “NoStressMS“
Over the years of living with MS, one of the things that I’ve found to be most helpful is possessing the ability to give yourself goals to aim at, to achieve but also embody grace when you don’t exactly hit the mark. Each day is different, especially when it comes to symptom management, learning when it’s an appropriate time to try to stretch yourself beyond your current possibilities and knowing when it’s best to ease up on the gas and try again another time has been one of the most helpful components to my wellness.
Finding the balance between the two helps keep me fired up to try to achieve more, but simultaneously lets me feel the joy in small victories and have that joy sustain my hope during times when I cannot do all that I envision.
Meredith O'Brien
Diagnosed 2014 Learn more about Meredith on her website meredithobrien.com and check out her new MS memoir “Uncomfortably Numb” available at Bookshop.org
Give yourself time to mourn this life-altering diagnosis and to adjust to the changes that accompany it. Be patient as you mentally and physically acclimate to the realities of your MS experience.
After being diagnosed, I tried to rush myself through this vital process, expecting my body to work the way it always had. When my MS symptoms prevented that from happening, I became angry with myself and wildly impatient with my body. I wasted precious energy which could have been directed toward healing.
If I was speaking with my newly-diagnosed self, this is what I would emphasize: give yourself time and be gentle with yourself at the beginning of this new chapter in your life.
Dave Bexfield
Diagnosed 2006 Learn more about Dave on his website ActiveMSers.org
Seize the day. No matter what MS throws your way, you’ll always be able to capture life’s sweet moments—those special times that overwhelm even this disease. Hold on to those—and never let them go.
And whether you are newly diagnosed or a grizzled veteran with this disease, I give all of my followers the same advice: be active, stay fit, and keep exploring!
Jennifer and Dan Digmann, a/k/a "A Couple Takes on MS"
Jennifer, diagnosed 1997 and Dan, diagnosed 2000 Learn more about Jennifer and Dan at A Couple Takes on MS
Remember to keep moving, manage your weight, connect with others to find the credible information and support you need, and never give MS more credit than it deserves.
You are the strongest in this relationship!
Tamara Sellman
Diagnosed in 2013 Learn more about Tamara at tksellman.com, and check out her newly published book Intention Tremor now available here
You will have a much better experience living with MS if you can learn to become your own best advocate. This requires finding and using specific kinds of tools for navigating the entire healthcare system (including insurance, hospital departments, specialists, and ADA protections).
You can’t do this alone. But that’s okay…reach out to others (especially other people with MS) to learn “insider” tips and finding support from MS-related organizations. They are there in abundance.
Also, don’t be afraid to ask for help and to demand answers from your healthcare providers. Seek out specialists who work with you as a team; avoid those who provide you with no options, who don’t listen to you, or who mock your efforts to self educate on the inner workings of MS. The best doctors appreciate patients who are willing to self educate because they seem them as empowered and treatable with better outcomes.
Being an empowered person with MS who practices self advocacy can make you a major force in the world! Don’t let MS stop you from being your own best self.
I would recommend anyone who has been recently diagnosed to go slowly. When you are looking for information about MS don’t seek out too much.
Learning about this disease is so challenging because it is so variable. When you are newly diagnosed it is easy to get TMI (too much information) and feel completely overwhelmed.
We don’t need additional sources of anxiety, after all these are symptoms that may not ever affect you.
Reserve your energy, emotional and physical for more productive things.
Other people who mean well will probably say things to you that shake your ground. (They do to me even 33 years in.) Lean away from those comments and lean in to a person (or group of people) with MS who “get it” and will give you the support you need. There are many people you will meet who will be invaluable in this challenging journey.
Jodi Dwyer
Diagnosed 2008
Learn more about Jodi on her Instagram page at @thejodibean (and meet her adorable pup Finley, too!)
I have SO much advice to give for someone who is newly diagnosed but I will try to keep it simple as to not overwhelm!
My best advice is to take things one day at a time especially because this disease can be so different everyday. Surround yourself with positivity. Stress feeds pain. The more stressed you are the worse you will feel. So surround yourself with a job that makes you happy (if you work), people who make you happy and hobbies that make you happy. I love my job and it fulfills me. I have an amazing family and friends who bring me joy. I’ve unfollowed people on social media who don’t bring me joy (the unfollow button is your friend!) I have many hobbies and when I have the energy I love doing them. From walking my dog (or cuddling my dog) to riding my bike, to binging a show on Netflix, baking, traveling and volunteering all make me happy. I know my time is valuable so I spend my time doing things I love. You should too!
Lastly, follow like-minded MS advocates/patients on Instagram and Facebook. Join MS Facebook groups that you find helpful. Read reputable blogs and websites for research and information. Make sure you have a partnership with your MS neurologist. This is key to making treatment decisions throughout your journey!
I could go on and on but those are the most important things that come to mind!
The advice I would give someone who is newly diagnosed would be to find an MS Center near them that specializes specifically in multiple sclerosis.
Of course I would reassure them that they will be able to handle anything and everything that comes their way and to never give up!
First things first though, when caring for yourself you need to find the best care and a place you are comfortable with for halting the progression of MS and being able to address your symptoms head-on as they come. A comprehensive MS center is generally proactive in symptom management as well as treatment.
Put your oxygen mask on first. Self-care in all aspects from exercise to your diet lifestyle to healthcare provide the best chance at living a full life with MS.
And always remind yourself, you can do this!
Lisa Emrich
Diagnosed 2005 Learn more about Lisa at her active Facebook page
After living with the ups and downs of chronic illness for decades, I’ve only recently learned a more important lesson.
No matter what has happened to you in the past or what you thought you could do or not do in the future, nothing is forever or unchangeable.
Each day, each week, each month, you make a gazillion choices. Make those choices with the unconditional love and support you deserve from your very first deep breath of the day to your final thoughts before sleep at night.
Why I'm Thankful For My Diagnosis
The philosopher John Lennon (or whoeversaid it first) famously wrote, "Life is what happens when you're busy making other plans." The life we imagine when we're young isn't always the one that we live. Our paths make sudden turns down unexpected byways, leaving us to survive unchartered territory.
March is MS Awareness Month, a time to remember over 2.3 million people worldwide who are living with multiple sclerosis, an unpredictable and incurable disease. Strength, love, hope and courage - those are the words to be mindful of this month.
And, of course a cure.
As February drew to a close I couldn't decide what I'd write about to honor this important month-long event. I mean, what else could I write about MS that I haven't covered already? And what positive spin could I put on it, because that's how I choose to look at my life.
Then it dawned on me.
It's easy to GO ORANGE with Max!
Like Clarence the Angel granting George Bailey the ability to see what life would have been like if he'd never been born (you knew I'd think of a classic film reference, didn't you?) I wanted to write about how different my life would have been without my diagnosis.
Why I'm thankful for my MS diagnosis
I would never have known the joy and unconditional love of dating someone who proposed marriage to me despite my recent diagnosis.
I would never have felt the compassion and understanding of family and friends who loved me at my worst.
I would have missed out on knowing extraordinary nurses who went above and beyond anything they learned in nursing school.
I wouldn't know people in the MS community, and other health-related communities, who continue to inspire and educate me every day through their strength and courage.
I would not have had a reason to use my love of writing to inspire, educate, and make a difference to others about living a positive life after a devastating diagnosis.
I would not have had an opportunity to write for health-related websites and online publications that allow me to write about something I feel passionate about.
I wouldn't know the generous and caring women in my blogging community who accept me for who I am, warts and all.
I wouldn't have had an opportunity to quickly chant my elevator speech about ability and disability to people who've made an impact on the world. Alan and Arlene Alda, John Gray, Goldie Hawn, Mrs. Gene Kelly and Steve Wozniak, to name a few. I "name drop" because I respect and admire all of them for stepping beyond their creative work to make a difference in the lives of others.
I wouldn't have been able to teach my son, by example, that disability doesn't mean inability, and that tolerance, compassion and understanding always matters most.
I look forward to the day when I can finally say, "I used to have MS." That will be the greatest day of all. In the meantime I'll be mindful that despite my diagnosis I'm surrounded by many blessings. And, like George Bailey, I cannot be a failure because I certainly do have friends - near, far, virtual, professional and furry.
I am thankful for my diagnosis because it taught me self-compassion, survival, to remain curious and to always keep hope in my heart.
About MS Awareness Month
National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the public's awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease, and to assist those with MS in making educated decisions about their healthcare.
To inspire others to create a world free of MS, click here to share your thoughts on The National Multiple Sclerosis Society's website.
Learn more about what MS is and find the latest research from the National Institute of Neurological Disorders and Stroke page called Hope Through Research.
