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?
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.]
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?
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!
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.
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.
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, 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!
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.
Diagnosed 2014
Learn more about Teresa on her website teresawrightjohnson.com
Take the time needed to process the diagnosis and learn all that you can.
Listen to your body and know you are your own best advocate.
Finally, always have hope.
Diagnosed 1988
Learn more about Amy on her website MS-LOL: Multiple Sclerosis a Life of Learning
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.
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!
Diagnosed 2008
Learn more about Jodi on her website, Edible Monster or on Instagram as @msjodijohnson or Facebook as Jodi Johnson
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!
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.
[…] What Advice Can Twelve MS Advocates Offer Patients About Living with the Disease? (Spoiler: Plenty) […]
Just reading this has actually made me feel better was diagnosed may 2020. They found lesions on my brain in 2019. Was seeing neurologist since 2017 and getting ready to see a ms specialist. At first after diagnosis just through myself into work then since december haven't been able to work and disease has been more aggressive and it has finally hit me I have this disease and nothing is going to be the same. I can still do some of the same things but just in a different way and a slower pace and that is the way I'm trying to feel doesn't always work but trying
I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, My care provider Dr Miller introduced me to Kycuyu Health Clinic & their MS herbal treatment.