Nearly 1 million people in the United States are living with multiple sclerosis (MS), according to the Multiple Sclerosis Association of America (MSAA). This neurological condition affects the central nervous system, causing fatigue, muscle stiffness, and other symptoms that can profoundly alter a person’s quality of life.
Although MS can strike at any age, it most commonly develops in people between the ages of 20 and 40. It affects women 2 to 3 times more often than men.
Still, anyone can develop MS, regardless of age, race, gender, and socioeconomic background. There are different degrees of severity. No two people with MS are alike, although there are some common challenges they face.
We interviewed four people with MS from a variety of backgrounds and asked them the same five questions on how they’ve found support, unexpected challenges they’ve experienced, how other people can help those with MS, and more.
These are their stories.
These interviews have been edited for brevity, length, and clarity.
Sonya Bryson-Kirksey: That there are different kinds of MS, and that it isn’t a death sentence.
Steve Guzman: When I was first diagnosed with MS, I didn’t even know what it was. I knew that I couldn’t see, I had trouble walking, that I had extreme dizziness beyond description. I was bedridden for 3 months and had to keep my eyes shut because they were bouncing uncontrollably. I had to depend on my other senses. I realized I could still hear, so my ears became my focus.
I heard my family in the living room talking to a few other friends and relatives, and they were so distraught. Most of them were crying. I thought someone had passed away and they hadn’t given me the news, so I shouted out, demanding they tell me what was going on. They didn’t want to show emotion in my presence, but they were crying for me.
Then it dawned on me: When my neurologist had given me the news that I had been diagnosed with MS, the news would not only affect me personally for the rest of my life, it would also affect everyone I know and love. My pain was their pain, as their pain is mine. That still kills me to this very day, and it’s the hardest pill to swallow.
Donovan Griffin: Self-care was not a practice that I followed before my diagnosis in October 2016. I wore stress as a badge of honor daily. I did not have good eating habits. I rarely attended doctor’s visits to inquire about my overall health.
I wish I had understood the importance of self-care and that stress and poor diet are major contributing factors to MS. As an educator, I sacrificed my well-being for work and was driven by career success in helping my students reach college graduation.
I wish I addressed the symptoms I experienced with my MS before being diagnosed. I have no regrets, but in life, you live, and you learn.
Lyssandra Vera: I wish I had known how to be more patient with myself. It was difficult to follow up with the diagnosis of an autoimmune disease since I had never heard of it. So, with that, I had a difficult time comprehending the “new norm.”
Bryson-Kirksey: Listen to their concerns and fears, and help them stay positive.
Guzman: Be patient. Sometimes we [people with MS] have no energy to do things or attend certain events we may have previously committed to. Also, sometimes we forget things, so we may ask you to repeat yourself. Clumsiness and MS go hand in hand. We often drop, spill, or break things. Please be patient with us. None of this is intentional.
Griffin: Listen! MS impacts everyone differently. Unfortunately, many people generalize MS through their lack of awareness about it, and they can become dismissive of the challenges that many of us with MS have. Listen to those with MS to understand the challenges instead of criticizing them and offering solutions. Failing to listen creates a strong likelihood for someone with MS not to be vulnerable with you moving forward.
Join a loved one living with MS to attend MS-related events, as many of the events provide thorough research and information to educate everyone about the condition. It can prompt curiosity and further discussions in an effort to be fully supportive as allies instead of bullies.
Vera: Educate yourself about the disease and how it runs. I believe it provides a sense of comfort when someone who does not have MS is sufficiently educated about it, so we [people with MS] do not have to follow a usual script of explaining the general information.
Bryson-Kirksey: I would not be the person I am today without support from my family and friends. I tend to lean on my husband and my sister the most. But when things become dire, I go to therapy at the VA [Veterans Health Administration medical center].
Guzman: I’ve never felt alone. I probably would not be here without the strong support I have from all my friends and family. I’m the guy with the huge turnout at the MS Walks with over 100 participants in my group.
The love and support I get from my parents, brother, sister, husband, brother-in-law, and all my other friends and family is unbelievable. I am truly one of the luckiest guys on the planet and feel immensely blessed to have so many loved ones. It’s virtually impossible to feel depressed when I’m constantly overwhelmed with so much love.
I also love reaching out and connecting with others who have MS around the world through the power of social media. We check in on each other from time to time and have created a unique support system of our own. No one truly understands what it’s like to live with MS except other people living with MS.
Griffin: My family and some of my closest friends visited me when I was hospitalized with MS and on medical leave from work in October 2016. Some of my friends even flew in to show love and support.
In the early stages of my diagnosis, I was heavily depressed while redefining my life with MS. I had put on a facade for months that everything was okay, but I was not. My colleagues noticed and informed my director, who was the only person at work with whom I shared my diagnosis. She provided a great amount of support in reducing some of my workload as I navigated professional challenges.
My neurologist and nurse practitioner told me about the National MS Society, and I attended my first group session in January 2017 before I returned to work. I’ve been hooked since! My support network has also attended the Walk MS events with me to learn about MS in an effort to fully understand my challenges and be effective in their support to me.
Vera: It’s crucial to maintain an ongoing support system throughout both good and bad times with MS. My mom is someone who constantly considers my MS, but she also reminds me that, “MS came to you, and not the other way around.” Therefore, I never let MS get the best of me, while also listening to my body.
Bryson-Kirksey: Having to slow down. Having been in the military, I’m used to doing 15 things at once. So, slowing myself down and taking my time to do things has taken some getting used to.
Guzman: I was diagnosed at a young age, and I was still in the closet back then. Dating was not on my radar. As I got older and became more comfortable and open about my sexuality, I began to date. The topic of, “Oh, and by the way, I have MS,” was never an easy one to have. It was hard to figure out how the other person would react to the news and when to share it.
I told my now-husband about my MS diagnosis on our third date. I asked him if he even knew what multiple sclerosis was, he said, “Yes, of course. And I also know that it is manageable, and that you are strong, and that I will do everything I can to support you.” I may have had to kiss a few frogs to find my prince, but I’m glad I never settled. Four years later, it has been nothing but love and support from my husband.
Griffin: Fatigue, brain fog, and organization are my most noticeable challenges.
My gym routine is not as lengthy as before my MS diagnosis. My body checks out more quickly over routines I had no issues doing before my diagnosis, like lifting weights, push-ups, and cardio. Self-challenges are not a problem; however, it’s important not to overexert myself for the sake of proving a point. It’s OK to make adjustments to routines for the sake of my sanity and well-being.
My brain fog occurs frequently, especially during lengthy conversations and group discussions. I stumble in collecting my thoughts or word findings to relay, which makes it appear that I am lost. However, I am often transparent in admitting when I need a bit of time to process or not to be interrupted to ensure I do not lose my thoughts midway in conversations.
During my most recent dating experience, she was aware of my MS and its challenges. During my episodes of brain fog during group discussions, she resumed conversations on my behalf while I collected my thoughts until I was ready to re-engage. She made sure I was OK and provided comfort to ensure I did not feel small.
Vera: Living with MS for 6 years, brain fog has been a difficult symptom for me throughout. It greatly interferes with my focus and recall, making basic things difficult to understand. I deal with it by being patient and explaining what is going on to the people I am with at the time, and asking for their patience as well.
Bryson-Kirksey: Being honest enough with myself, to recognize when I need to take a beat to rest and regenerate. Reading and listening to music help me to relax.
Guzman: It’s interesting how people who have MS are considered disabled when I’ve never felt more abled. Do things that bring happiness to your life.
I have a passion for film and video, and I had just started my first year in film school when I was first diagnosed with MS. I had to drop out of school, but as soon as my symptoms went dormant, I re-enlisted. [That’s when] I met some of my now-best friends and was able to obtain the fundamentals that would catapult my career as a filmmaker and eventually allow me to start my own production company, albeit small but able.
I have a great love for animals. My husband and I have over 20 pets. Caring for and spending time with our pets has given me a purpose to get up in the mornings even on those not-so-good days, because our babies need to be fed and they can’t feed themselves.
Give yourself a reason to get up in the morning, even on those bad days, which we all get from time to time. Find a distraction that fascinates you. My intention is not to get rich off my side projects, but do them because they genuinely make my heart and soul happy.
Griffin: During my workaholic days before my MS, I never took time off. Now, I take sick days guilt-free, take two-week vacations during the year, and give myself an unlimited amount of grace.
Self-care also means not punishing myself for making honest mistakes. I would accidentally drop something because of my nerves or anxiety. Before my diagnosis, I would panic and overwhelm myself with how others would perceive me for a mistake. Now, I laugh about it. I am human.
Vera: I practice self-care by doing things that make me happy. For me, that means investing in time with family and friends, exercising, and working on journalism.