Multiple sclerosis, or MS, affects about 2.3 million people worldwide. Living with the condition can present a host of challenges. Luckily, no matter what you’re going through, there’s usually a person, activity, personal mantra, or even a product to help give you the support or motivation to keep going.
We asked you: when you have MS, what’s one thing you can’t live without?
“Hope. I couldn’t live without hope. Although I don’t foresee what many would consider a ‘cure’ for MS in my lifetime, that doesn’t mean that I do not have hope for that cure. Mostly, it’s a hope that ours is the last generation to live without a cure for multiple sclerosis. But here’s the thing: Hope without a plan is just a dream. I suppose what I really couldn’t live without is the knowledge that some of the brightest, some of the most dedicated, and some of the most compassionate researchers of our age are working to end this damnable disease. There is a plan. They are the plan. So my hope is not just an empty dream.”
“The one thing I cannot live without is my online community of folks living with MS. These spaces provide so much needed support, information, friendship, and (virtual) hugs! I find so much comfort knowing I have friends out there going through similar things.”
“At the time of my diagnosis, I was a husband and father. What mattered most to me then remains the same now: [my family]. Although MS might sink its chronically ill fingers into almost every aspect of my life, it will never touch my spirit and determination to give my wife and children the best me possible. Every. Single. Day. Adjust, adapt, and abide — that’s my motto. It’s not easy, and it’s not without quite a few bruises, some tears, and a whole lot of needles (ha). Living with MS, I have no idea what tomorrow might bring, let alone 30 seconds from now, and I can’t imagine riding this crazy roller coaster of MS without my family by my side.”
“I could not live without support. MS can be such a lonely disease, but since I know there are people who love and support me, I feel like I am not going through this journey alone.”
Simone S. is a member of the Multiple Sclerosis Association of America community.
“My support system is very important to me. Family, friends, my spouse, and even social media buddies all play a major role in helping me battle MS. They are always there when I’m having a hard time. The constant uncertainty associated with multiple sclerosis can be very scary. And in those moments when I look around and my MS brain doesn’t recognize anything, [these people] reassure me I’m safe. Having that comfort is the one thing I can’t live without.”
“Being an MS patient and [with] what I am doing for the MS population, I am often asked: where do I get all my energy? My answer is simple: I get it from the MS community! I get it from those who give me the energy to do what I do. So, the one thing I cannot live without is the people who I have come to know who are affected by MS.”
Stuart Schlossman is the founder of MS Views and News.
“The one thing I can’t live without (other than my wife, Laura)? Getting outdoors and into nature. It refreshes the body, the mind, the soul — all essential to elevate when you have multiple sclerosis.”
“I have found that the most important thing that gets me through my war against MS is my support network. Whether it’s the doctors and nurses who care for me, the agencies that provide counseling and programs for me, or the family members who shop with me, babysit for me, and give me lots of unconditional love, each is an integral part of my wellbeing. It goes against my fiercely independent nature, but I know that a village doesn’t ever stop raising a child. I am forever grateful for mine.”
Sara B. is a member of the Multiple Sclerosis Association of America community.
“The one thing I can’t live without is my morning routine. Spending time each morning feeding my heart, mind, and body helps me stay strong and focused throughout the day. My morning routine changes, but it’s typically some combination of writing, meditating, and exercise, like yoga or walking.”
“I know how important a care partner is in living with this disease. But I cannot live without my wheelchair. It’s my ability, freedom, and independence. As you may have noticed, I’m pretty specific about my chair. Recently, Dan and I were traveling and thus using a smaller, more portable chair. It worked, but it isn’t my Grape Ape, which is my chair’s name. (Some people have children, but I have power wheelchairs, thanks to MS.) Grape Ape is big, powerful, and able to recline to relieve pressure from sitting all of the time. I couldn’t live with multiple sclerosis without it.”
“At the risk of sounding cliché, I don’t know where I’d be — particularly mentally and emotionally — without my husband and my family. Everyone is so positive and understanding when I’m having a bad day or a flare-up. My mom has accompanied me to many doctors’ appointments and every single one of my MRIs. She and my father offer unsurpassed love and support, as well as perspective, while still acknowledging how I feel and allowing me to experience it fully. My brother and his soon-to-be wife offer assistance and protection, and they walk by my side every year at our local Walk MS. And my husband? He is my lifeline. He notices changes in my mobility, behavior, and symptoms sometimes even before I do. He willingly and automatically picks up my slack when my energy reserve is low. If he picks me up from work, he is sure to take the long way home, so that I can sneak in a short nap. I didn’t choose to share my life with MS — but my husband and my family did. And I am forever grateful to them for their love.”
“I think what helps me cope with MS is my fiancée and my stepchildren. Having a family and a future to look forward to has really changed my perspective.”
“With MS, I’ve learned never to say there’s something I can’t live without, because that may be the very thing I lose next. But in the spirit of this question, one thing I would hate to lose would be my voice. I use voice recognition software to write my blog, the book I’m working on, emails, and texts. I use my voice to operate lights, ceiling fans, shades, and televisions. I use my voice to remind my wife that I love her. Given that I’ve already lost all of the function in my legs and much of it in my hands, if I lost my voice, life would become much more difficult.”
Mitch Sturgeon is the author of Enjoying the Ride.
“A back up plan. Every single day looks and feels different. There is no way to predict what tomorrow will bring (even an hour from now can bring surprises). Allow yourself to be as flexible as possible when setting up expectations or making commitments, but also be kind to yourself and don’t judge when things don’t go as planned.”
“Besides the enormous and irreplaceable support from members of MSAA, I’d unhesitatingly say [the thing I can’t live without is] the cooling vest you offer us. Without it, I would continue to be confined. I can’t thank the MSAA enough for giving me back a part of my life I missed out on so much of, until recently.”
Cathy F. is a member of the Multiple Sclerosis Association of America community.
“If I could only pick one product that helps with my MS, it would be SpeediCath Compact Eve (by Coloplast). I really can’t live without it. I didn’t get there overnight. In the beginning I couldn’t bring myself to even say the word ‘catheter.’ She liberated me. I had the security to leave the house, go to bed, stay in a hotel, or at a friend’s place.”
And from our Living with MS Facebook community:
“I must say it would have to be my hubby. I don’t know what I’d do without him.” — Dawn K., living with MS
“A ride! LOL … Seriously though, I’m widowed and can no longer drive. I need a ride everywhere I go. The true answer is, family, friends, and the kindness of others. They never let me down.” — Michelle W., living with MS
“Wine.” — Raymond W., living with MS
“My recliner and sleep and my TV.” — Julie E., living with MS
“Family and compression knee high socks! I like the inexpensive black ones from Rite Aid best, but have a real hard time finding them. I’d buy a case if I could. Yep, socks and SAS sturdy sandals — that’s me, and thank goodness my daughter finally stopped teasing me about that. Stay strong and do what’s right for you. [You] can’t be vain when you have MS.” — Jennifer F., living with MS
“Determination.” — Bob A., living with MS
“My wonderful neurologist!” — Cindi P., living with MS
“Yoga. It really, really helps.” — Darlene M., living with MS